)
THE LEA TOTO PROJECT
An evaluation report of a community based
project for the care ofHIV+ orphans and their
families
May 2001
USAID/Kenya
P. 0 box 30261
Nairobi
LEA TOTO EVALUATION REPORT
Table of Contents
Executive Summary 1
Background 4
The Situation of Children affected by HIV/AIDS in Kenya 4
Overview of the Lea Toto Project 5
The Lea Toto Evaluation 5
Results of the Lea Toto Evaluation 7
Achievement of goals and objectives 7
Objective 1: Physical care to HIV+ orphans and families 7
Objective 2: Psychological and moral support 8
Objective 3: Community strategies 10
Objective 4: Organizational capacity building 12
Financing, management, reporting mechanisms 12
Financial management and Reporting 12
Program management and reporting 13
Monitoring and Evaluation 15
Potential contributions to care of OVC 16
Challenges/opportunities, Lessons learned 18
Recommendations 20
Conclusions / The Way Forward 22
References
Appendices
1. Lea Toto Assessment Scope of Work (SOW)
2. Evaluation Team Members
3. Methodology
4. List of Interviewees
5. Notes from Stakeholder meeting
6. Questionnaire tools
7. Principles to Guide Programming
8. Fulfilling commitments- international agreed upon goals and targets
9. Proposed process for developing consensus on principles of collaboration
1. Executive Summary
The increase in the number of orphaned children due to HIV/AIDs is reaching
alarming proportions in Kenya. The number of children living with HIV/AIDS in
Kenya by 2000 was estimated at 850,000, and will increase to 1.5 m by the year
20051
• There are several efforts under way in Kenya to address the HIV/AIDS
problem. USAID supports Catholic Relief Services (CRS) to provide technical
support to the Lea Toto project, a two-year community-based activity which
enables children to remain with their caregivers in their own communities. The
project is located in Kangemi a slum on the outskirts of Nairobi. The overall goal
of the project is to improve the capacity of the Kangemi community to provide
holistic care within a family setting for HIV positive orphans living in the
community. The primary purpose of the evaluation was to review progress made
towards reaching this goal.
1.1.Project Objectives:
The Lea Toto project has four objectives:
• By the end of the project, 200 HIV+ children will have received physical
care and essential medical supplies to alleviate their suffering;
• By the end of the project, psychological and moral support will have been
provided to 200 HIV+ orphans and their families;
• By the end of the project, the Kangemi community will have identified or
established six sustainable strategies to enable the community to cope
with the needs of AIDS orphans;
• By the end of the project, the organizational capacity of the Lea Toto
project to manage community-based support to orphans will be improved.
1.2. Findings:
Physical care and essential medical supplies: During the two-year period
the project provided physical care to a total of 152 children out of a targeted
200. However the Lea Toto project has been able to reach a lot more children
including those not infected but who are family members of infected children.
Data used to report achievements do not currently reflect these
accomplishments since the program goal is to reach HIV+ children.
There is a lot of stigma attached to HIV/AIDS within the Kangemi community
and this has made it difficult for the project staff to identify and enroll HIV+
children. The children receive medical treatment for opportunistic infections,
but current procedures do not allow clinical staff to identify symptoms of drug
reaction that might occur as a result of long term use of drugs.
I AIDS in Kenya, NASCOP, 1999
Psychological and moral support: Lea Toto has been able to initiate
support groups in Kangemi thus enhancing participation in counseling
services given to caregivers. The program has yet to develop a strategy to
ensure that children play an active role in their own lives in terms of living with
HIV/AIDS. Many children understand that they are unwell but they do not
know exactly what is wrong with them. Counseling is provided directly to the
caregiver enrolled in the program and not to children. Child-centered
counseling is needed to enable caregivers and Lea Toto staff to better
address the psychological needs of the HIV+ children and their siblings.
Sustaining community strategies: Lea Toto has encouraged community
health workers working with other NGOs in the Kangemi area to participate in
Lea Toto training sessions and has provided some income generation
opportunities to a few caregivers. It would seem from the evaluation findings
that because community ownership and involvement was not a focus of the
design, the Kangemi community tends to see Lea Toto as a service provided
to them from the outside. Staff expertise also seems to focus on individual
and family level care and counseling and not on mobilizing communities to
facilitate community ownership and participation.
There are no other HIV/AIDs focused activities in the area hence the demand
and expectations of Lea Toto are beyond what they can currently provide. To
achieve results from community mobilization efforts Lea Toto needs to ensure
that efforts resonate with the priority needs of the community. As it is currently
the community approach was designed without the involvement of the
community.
Lea Toto organizational capacity: All staff at Lea Toto demonstrated
extensive experience with HIV+ children gained from their previous work at
the Nyumbani orphanage and showed a lot of dedication to their work. Lea
Toto staff felt that CRS technical support contributed to the implementation of
the program. However, the capacity building potential of CRS was not fully
exploited by Lea Toto over the two-year period. There is a need to enhance
this component of the program to provide Lea Toto staff with technical and
management skills necessary to sustain the program.
The current financial management and reporting system is reliable and
efficient. However consideration should be given to providing Lea Toto the
option to submit electronic expenditure reports to CRS as this will save time
and financial resources without compromising financial accountability. While
there exist good financial and clinical skills within the management of Lea
Toto, there is need for technical leadership especially with regard to
programming and community mobilization.
The team recommends that Lea Toto management reconsider staff terms of
service and emoluments to retain high quality staff. It would also be useful to
have a steering committee at the Board level that would include people
outside the board but who can bring some administrative and programmatic
experience to the program.
2
Potential contribution to ave: Lea Toto offers a unique model with the
potential to inform efforts that focus on children infected and affected by
HIV/AIDS on an international level. Lea Toto is a community-based activity
that was initiated by an institution-based program thus giving a new
perspective on how institutional facilities can operate more effectively. There
are, however, many challenges that need to be addressed. Among these are
the need to put in place a holistic approach to the care of PLWHA; the effect
of stigma on program implementation; linking income-generation opportunities
with care of children; resolving the issue of community-based versus
community- owned initiatives; and linking care and support with prevention
activities.
1.3. Recommendations:
Based on the findings of the assessment, the evaluation team recommends
continued support of the Lea Toto project to increase coverage. The team
recommends that the Lea Toto program reconsider its community approach
and find the necessary technical support to increase community outreach and
involvement. Lea Toto should initiate strategic planning with potential partners
in and outside the community to increase access to care and support VCT,
HIV/AIDs prevention efforts and reproductive health information.
In terms of capacity building it is recommended that Lea Toto improve its
technical capacity and make more effective use of CRS' expertise. CRS
should work with Lea Toto to allow a streamlining of financial reporting. A
steering committee comprising of various partners could help streamline
administrative roles and relationships between Nyumbani and Lea Toto.
Finally the current monitoring and evaluation plan needs to be improved to
collect optimal data for management and implementation of the Lea Toto
program.
3
2. Background
2.1 The Situation of Children Affected by HIVIAIDS in Kenya
Who are the Children and
Adolescents Affected by
HIV/AIDS?
• Those who live in a household
with a parent or other family
member who is ill;
• Those whose parent {mother or
father} or both parents have
died;
Children/adolescents identified
as vulnerable in communities
affected by HIV/AIDS might
include:
• Those who live in families in
which resources - financial and
emotional - are over-stretched
as a result of increased numbers
of children for whom they are
responsible;
• Those who live in communities
severely affected - economically
and socially - by the impact of
HIV/AIDS
It is estimated that 13.3 percent of the adult population in Kenya is living with
HIV/AIDS, with the prevalence rate generally higher in the urban areas. The
consequences of the AIDS epidemic go well beyond the massive number of
preventable deaths. AIDS is having
devastating impacts on children, families, and
communities. Among those most affected by
the disease are children orphaned or
otherwise affected by its impacts. The
number of children orphaned or otherwise
made vulnerable by HIV/AIDS is enormous
and continues to grow. It is estimated that the
number of children whose mother or both
parents have died as a result of AIDS in
Kenya by the year 2000 was 850,000 and
that this figure will go up to 1.5 million by
2005 (AIDS in Kenya, NASCOP, 1999).
These estimates include only children less
than 15 years old who have lost either their
mother or both parents as a result of AI DS
and they greatly underestimate the number of
children affected by the disease. The
statistics do not include the vast number of
children who are living with parents who are
ill, often becoming the primary care providers
for their parents and for their siblings. Others
are living in households where the financial
and emotional capacity is over-stretched as a
result of caring for increased numbers, often
orphaned children. Though the statistics on orphans include children only until
they reach age 15, those who are older continue to live with the effects of
HIV/AIDS - as a result of trauma and grief; as heads of households; or other
circumstances, such as poverty, that are exacerbated by the impact of AIDS.
Often, these children and adolescents are living in situations by which they too
become more vulnerable to becoming infected. The USAID report, Children on
the Brink 2000, estimates that over 1.2 million children have already lost their
father, mother or both parents as a result of AIDS and of other causes in Kenya.
This latter estimate provides data more relevant to programming because
program planners and implementers do not generally distinguish between those
children whose father has died versus those whose mother has died, or children
whose parents have died as a result of HIV/AIDS versus other causes.
4
2.2 Overview of the Lea Toto project
The Lea Toto project is a program of the Children of God Relief Institute's
(COGRI), as is Nyumbani Orphanage. Nyumbani was founded in 1992 by Father
D'Agostino to provide care for children with HIV/AIDS. The orphanage currently
provides an extensive array of services for 65 children, including education,
nutrition and comprehensive medical care. Recognizing that the orphanage was
unable to provide direct support to the growing number of HIV+ children in the
Nairobi area, Nyumbani initiated the Lea-Toto/Nyumbani Program in 1998, as a
community-based activity by which children can remain with their caregivers in
their communities. This project is a mobile outreach activity designed to provide
medical care and support to HIV+ children and their families in the slums of
Nairobi.
In 1999, USAID provided funds to Catholic Relief Services (CRS) to support
COGRI/Nyumbani to implement a community-based program in the Kangemi
area of Nairobi for two years, from October 1, 1999, to September 30, 2001
called Lea Toto/Kangemi (henceforth referred to in this report as "the Lea Toto
project). Kangerni is a slum area located in the western parts of the city, with an
estimated population of 72,000. The location was chosen for the site of Lea Toto
because, unlike many of the slum areas surrounding Nairobi, there were no
Evaluation of the Lea Toto development agencies that were already
project- Key Assessment providing care for people living with HIV/AIDS in
Areas Kangemi.
(Appendix 1 - SOW)
2.3 The Lea Toto project Evaluation
Financing, management
and reporting
mechanisms
Challenges/opportunities
and Lessons Learned
Contribution to
community-based care of
HIV+ children and other
children affected by
HIV/AIDS in Kenya
•
• Achievement of goals and
objectives
•
•
This report documents an evaluation of the Lea
Toto project, which took place between April 30
and May 11,2001, and involved eight team
members. The team consisted of representatives
of Lea Toto, Nyumbani, CRS, UNICEF/Kenya,
USAID/Kenya and USAID/Washington (See
Appendix 2 - List ofteam members). Individual
interviews with one or two interviewees were
conducted with 29 people, including the
Nyumbani/Lea Toto founder, representatives from
the COGRI/Nyumbani Board of Directors, project
supervisors and staff from Nyumbani and from
Lea Toto, representatives from Kenya government and from local organizations,
and opinion leaders. Separate focus group interviews were conducted with Lea
Toto beneficiaries, community health workers, and Lea Toto staff (See Appendix
4 - List of interviewees); and a meeting of stakeholders was convened, including
twenty-five participants (See Appendix 5 - Stakeholders meeting). All interviews
were conducted by at least two members of the evaluation team. The objectives
of the evaluation are listed in the box to the left and the following sections of this
document reflect those evaluation objectives. (See Appendix 1 - SOW;
Appendix 3- Methodology).
5
As a sister-organization to the Nyumbani orphanage, Lea Toto offers a model for
programming whereby community efforts have been launched by an institution
and supported to initiate community activities. These activities have the. potential
to reach a much greater number of children than could otherwise be supported
through the orphanage. In preparing for the evaluation, the team could identify
no other documented example of the type of model offered by the Nyumbani-Lea
Toto effort that focuses on HIV+ children and their families. Thus, the project can
play an important role in informing similar efforts in Kenya, as well as globally.
Because there is a dearth of experience with this type of intervention to address
the needs of children infected by HIV/AIDS, Lea Toto has been tasked with
implementing this unique set of activities without the benefit of lessons learned
from others. The evaluation has provided an opportunity for Lea Toto and its
partners to examine what they have learned during the year and a half since the
program began and to strategically plan for the next phase of operation.
The following section includes the results of the assessment, categorized
according to the specific areas of focus set forth for the evaluation team by their
scope of work.
6
3. Results of the Lea Toto Evaluation
3.1. Achievement of Goals and Objectives
Lea Toto project
Objectives
Improved organizational
capacity of Lea Toto project
Six sustainable community
strategies to enable
community care of AIDS
orphans.
Psychological and moral
support to 200 HIV+
orphans and their families.
Physical care to 200 HIV+
orphans and their families
•
•
•
•
The over-arching goal of the Lea Toto project is to
"improve the capacity of the Kangemi community
to provide holistic care within the family setting for
HIV+ orphans living in this community". Four
objectives were identified in the project proposal to
achieve that goal, as summarized in the Text Box
to the right. A primary purpose of the evaluation
was to review progress in reaching these original
objectives. Through interviews and review of
written reports, the evaluation team identified
components of the Lea Toto interventions that
contributed toward achieving its objectives and
components that did not. Related to the latter -
those that detracted from Lea Toto's forward
movement toward achieving its goal - the team
attempted to identify potential recommendations that might improve program
functioning (see Appendix 6 - Questionnaire tools). Thus, the findings of this
evaluation can be used as input to a strategic planning process to guide the
Program in its next phase of operation.
Objective 1: By the end of the project, 200 families with HIV+ orphans will
have received physical care and essential medical supplies to alleviate
their suffering.
Accomplishments:
• 152 HIV+ children have been enrolled in Lea Toto, 20 of whom
have died;
• 140 caregivers of these children have been trained in home-based
care of HIV+ children;
• Enrolled children are given prophylactic antibiotics, multi-vitamins,
paracetamol to use as needed for pain and fever; and they are
treated for opportunistic infections;
• Families of enrolled children are provided medical care as needed;
• 52 beneficiary families have been provided with intermittent food
supplies;
• Caregivers and Lea Toto staff describe improvement in physical
well being of beneficiary children.
Observations:
Lea Toto has identified and provided on-going medical care to 152 HIV+
children and their families. This includes prophylactic medication, as well as
diagnosis and treatment of opportunistic infections. Caregivers, as well as
staff at Lea Toto and Nyumbani, identify marked improvement in the health of
Program beneficiaries. Though Lea Toto targets HIV+ orphans, in fact the
7
Program also provides medical and other care to family members of HIV+
children and to cl-lildren who are not orphans. The infected children are not
all orphans; many are living with their mothers who are also HIV-infected. In
addition, medical care is provided to HIV-negative caregivers, as well as other
children living in the household. The latter children, though not HIV+, are
vulnerable children who are affected by HIV/AIDS. Data used to report
achievements of Lea Toto do not currently reflect these accomplishments
because the stated objectives include only HIV+ orphans.
Identification and enrollment of HIV+ children has been difficult for Lea Toto.
Stigma regarding HIV/AIDS within the Kangemi community is high.
Interviewees report that a contributing factor to the reluctance of caregivers to
be associated with Lea Toto is the stigma identified with the program as a
result of its exclusive focus on children who are HIV+. Caregivers who do
enroll children often express extreme concern that others in the community,
including family members, might find out that they are utilizing Lea Toto
services.
On-going prophylactic treatment with antibiotics is provided to protect HIV+
children from dangerous opportunistic infections. At the same time, this
creates a medical condition among the recipients that necessitates the
availability and provision of even stronger (and not commonly available)
antibiotics when the children become ill. Therefore, cessation of medication
provision currently provided by Lea Toto would be potentially harmful to
children now benefiting from the program. In addition, Bactrin is utilized as an
ongoing prophylactic for enrolled children. Current procedures do not enable
clinical staff to identify symptoms of drug reaction that might occur as a result
of long-term use of this sulpha based medication.
Objective 2: By the end of the project, psychological and moral support will
have been provided to 200 HIV+ orphans and their families.
Accomplishments:
• 142 caregivers receive regular counseling from Lea Toto staff;
• Enrolled beneficiaries and their families are visited at home by Lea Toto
staff;
• Four monthly support group meetings for caregivers are implemented by
Lea Toto;
• As a result of the Lea Toto support groups, some caregivers have begun
to provide informal support to each other outside of the Lea Toto initiated
activities;
• Lea Toto has tested 800 children for HIV, providing pre- and post-test
counseling to their caregivers;
• Lea Toto has tested 473 adults for HIV, providing pre- and post-test
counseling.
8
Observations:
Counseling is provided to all caregivers of Lea Toto beneficiary families.
Regular support groups have been initiated and are attended by caregivers.
In fact, informal networks of caregivers have been fostered as a result of the
Lea Toto initiated support groups and some members have begun to
informally provide support to each other.
Few of the children know their sero-status and even when they reach the age .
when they are likely to become sexually active, the program has not yet
developed a strategy to ensure that children play an active role in their own
lives in terms of living with HIV/AIDS. This may be based on an implicit
assumption that the child will die before becoming sexually active. In
addition, because of the stigma and the reluctance on the part of caregivers
to acknowledge that the child is HIV-infected, many children understand that
they are unwell but do not know exactly what is wrong with them, living with
both their own and their caregivers' anxiety without ever knowing the truth.
Currently, counseling is provided solely by staff members, and concern has
been expressed that there are not enough staff members available to meet
the needs of their beneficiaries. Counseling is provided to the caregivers
enrolled in the Program, not directly to children. Therefore, child-centered
counseling is needed to enable the caregivers and/or Lea Toto staff to better
address the psychosocial needs of the HIV+ children and their siblings.
Though staff members have attended counseling training, the current ability
of the staff to address the child-related needs of their beneficiaries should be
assessed and technical assistance provided where this support is indicated.
For example, interviewees identified a gap in the ability of Lea Toto to work
with caregivers in planning for alternative care for the children should the
parent become ill or die (76 of the HIV+ children enrolled in the Program are
being cared for by a single mother who is likely to also be HIV-infected). This
is an especially important area to consider because a large proportion of the
caregivers does not inform other family members of the serostatus of the
children. Therefore, other family members do not know about the special
medical needs of those children.
Lea Toto entered the Kangemi area because it was under-served in terms of
care for people living with HIV/AIDS and their families. This dearth of related
activities with which to link strains the capacity of the Program to address the
needs of the families who are being identified through their testing and care
activities. A challenge facing Lea Toto in the next phase of operation will be
to facilitate and maximize programmatic linkage with related programs both
within Kangemi and outside of Kangemi in order to improve access to holistic
care for its beneficiaries.
9
Objective 3: By the end of the project the Kangemi community will have
identified or established six sustainable community strategies to enable
the community to cope with the needs ofAIDS orphans.
Accomplishments:
• 25 community health workers have been trained by Lea Toto;
• Income generating activities have been implemented:
30 caregivers were trained
11 caregivers received second hand clothing to raise income
one co-operative group is producing handicrafts
• 16 youth have been trained in HIV/AIDS prevention
• Community outreach has reached 3,647 people in Kangemi
Observations:
Community health workers (CHWs) who are affiliated with other NGOs within
the community are participating in regular training sessions conducted by Lea
Toto. They are trained to provide information and education regarding
HIV/AIDS in the community and to refer community members to Lea Toto for
counseling when necessary.
Of the 25 community health workers (CHW) trained, 11 remain active.
Because of the concern of Program beneficiaries for the confidentiality of HIV
serostatus, they do not allow these CHWs to work with them in the community
unless the CHW is someone they knew before becoming involved with Lea
Toto.
Lea Toto has attempted to provide income-generating opportunities to
caregivers. Training was provided to 30 caregivers and second-hand clothing
was provided for sale to 11 families. Among those caregivers who received
training in income generating or second-hand clothing, only two recipients
remain active in sustained income generating activities.
Widespread community outreach was accomplished with the support of
foreign volunteers who were temporarily available to Nyumbani and
participated in door-to-door outreach activities. These activities are not on
going.
Identification and development of community-owned strategies to enable the
community to provide continuing care to HIV+ orphans has been a major
challenge for the Program. Lea Toto seems to be viewed by Kangemi
community members as a service provided to them from outside of the
community. This perception influences the type of involvement by community
members in providing on-going support to children other than those for whom
they are the primary caregiver. Community ownership and involvement was
not a focus of the intervention from its inception, having originally been
developed without community input or partners and situated in a site adjacent
to, but outside of, the Kangemi slums. In addition, staff expertise includes a
strong focus on counseling and care at the individual and family level, but
10
does not include strength or focus on mobilizing communities to facilitate
community ownership and involvement. The baseline survey, sometimes
used as a tool to mobilize community opinion leaders around issues of
concern to the community, did not involve community members and was
limited in its ability to inform program implementers about community-felt
needs and structures that could support community mobilization around
HIV/AIDS related issues. Therefore, Lea Toto staff is responsible for all
interventions and is faced with a great deal of dependency and high
expectations on behalf of the beneficiaries, with insufFicient community
support or volunteer activity.
The decision to work in the Kangemi slums was partially influenced by the
lack of other HIV/AIDS activities already present in the area. There are,
therefore, huge gaps in meeting the many HIV-related needs in that
community. These needs are in addition to the unemployment, poverty, and
other problems that affect the ability of Program beneficiaries to handle the
additional stress imposed by chronic illness and death. Even if Lea Toto
were to increase its attempts to mobilize the community around sustainable
strategies to care for HIV+ children, their attempts may not ultimately meet
with success if their efforts do not resonate with the community as a priority
for action.
To date, efforts to achieve Objective 3 have been unsuccessful. There are a
number of possible explanations: 1) lack of technical expertise in community
mobilization; 2) the target of the Program (HIV+ orphans) may not resonate
with community-felt needs; 3) Program development did not incorporate
community input or community-felt needs from inception; 4) heterogeneity,
transience, and stresses such as poverty on community members make it
difficult to achieve community ownership and sustainable community
responses. Whatever the reasons, future work in this area would necessitate
strategic re-evaluation of this objective and modifications in the approach
necessary to achieve it.
Objective 4: By the end ofthe project, the organizational capacity ofthe Lea
Toto project to manage community-based support to orphans will be
improved
Accomplishments:
• Three Lea Toto staff members attended counseling training;
• Two staff members attended specialized training;
• On-going technical support has been provided by CRS.
Observations:
A large proportion of the Lea Toto staff members had previously worked at
Nyumbani; their dedication, their loyalty to the organization, and their
experience with HIV+ children is extensive. The dedication of the Lea Toto
staff toward their work in Kangemi is impressive. (The team also noted that
their salaries are relatively low for similar postings elsewhere.)
11
Technical support for increased capacity has been provided by CRS to Lea
Toto and has been described by Lea Toto and by CRS as having contributed
to increased capacity and improved programming implementation of Lea
Toto. A supportive relationship exists between the field staff of the two
organizations. However, the capacity building function that CRS has to offer
has not been fully utilized by Lea Toto during the past two years.
Representatives of both organizations expressed a desire to maintain a more
consistent relationship during the next phase of operation.
3.2 Financing, management, reporting mechanisms
Financial management and Reporting
Lea Toto's current financial reporting system is reliable and efficient. The
accounting system is computerized and has the capacity to produce
electronic monthly financial reports. Each month, financial reports are
prepared in a detailed Excel document and sent to CRS, together with a stack
of third party documentation. These are processed by CRS/Nairobi and
submitted to CRS/Baltimore, and then to USAID. Source documents are filed
according to the monthly submissions to CRS. The program manager
basically controls and manages the system single handedly.
With respect to financing of Lea Toto activities, CRS advances funds to Lea
Toto to support its activities based on quarterly cash needs. The turn-around
time for funding requests is usually within a week. The current system is
therefore sufficient and effective.
Observations:
Segregation of duties with regard to financial procedures is recommended
and would necessitate delegation of more bookkeeping responsibilities by the
program manager to the secretary. The assessment team reviewed the
accounting qualifications of the incumbent secretary and found that she is
competent to do the bookkeeping duties and additions.
In order to increase the efficiency by which financial reporting is conducted,
consideration should be given to providing Lea Toto with the option to submit
electronic expenditures to CRS, in conjunction with periodic on-site third party
document reviews. The electronic process can save both Lea Toto and CRS
time and financial resources without compromising financial accountability.
Budget
The current budget was developed prior to implementation of the program
activities. Because this was a new set of activities, there was no pre-existing
data available to guide its development. Therefore, the current budget is
based on inputs rather than experience with program activities that contribute
toward achievement of Program objectives. For example, the current budget
was developed with the expectation that the NyulTlbani medical facilities
would be utilized more often by acutely ill Lea Toto beneficiaries than was
ultimately the case. The budget, therefore, includes a significant amount for
renovation of the Nyumbani facility.
12
Observations:
Development of the budget during the next phase of operations can benefit
from the experience gleaned as a result of Lea Toto's initial eighteen months
of activities. The next phase of activities will focus less on start-up costs and
more on expanding technical capacity and coverage of program activities.
Technical considerations should be considered primary in developing the
budget for the next phase of operations. These considerations should reflect
a comprehensive strategic planning process conducted by Lea Toto and CRS
staff in light of lessons learned during the 'first phase of operations and during
this evaluation process.
Monthly financial reports submitted by Lea Toto to CRS are based on over
thirty line items. CRS controls Lea Toto expenditures on those items with
little flexibility. The assessment team is of the view that CRS should consider
giving Lea Toto increased flexibility by allowing them to report on major
expense categories (e.g., personnel, travel, etc.). This would reduce the line
items reported from over thirty to less than ten. The reduction would save
time on reporting and would, at the same time, improve the quality of budget
oversight and control by CRS.
3.3 Program management and reporting
According to the current organogram, the Lea Toto project manager reports to
the chief manager at Nyumbani, who then reports directly to the founder and
director of Nyumbani orphanage. Monthly programmatic reports are prepared
by the program manager in conjunction with the financial reports and
submitted to CRS and subsequently to USAID.
The position of project director was unfilled from the inception of the project in
October, 1999, to May, 2000, at which time the current director was hired.
His background is in financial management at Nyumbani and his skills are
excellent and of great benefit to the financial accountability of the Lea Toto
project.
There remains a need for technical leadership within the Lea Toto project,
especially with regard to community mobilization and increasing Program
coverage, the number of beneficiaries reached.
Nyumbani staff and the Chairman of the Board of Directors expressed
support for the Lea Toto project. The Board of Directors has had little
opportunity to become directly involved with the Lea Toto project, though
doing so would enable them to provide increased support and
encouragement to the Program staff. The Chairman undertook to bring to the
attention of the Board of Directors the need to show more interest and
involvement with Lea Toto project and to discuss it regularly at Board
meetings.
13
The administrative roles and relationships between Nyumbani and Lea Toto,
and between CRS and Lea Toto are unclear. For example, the process of
hiring a consultant, such as for the design and implementation of the baseline
survey for the Lea Toto project or for technical consultation to the Program,
was managed through Nyumbani. The distinct roles of Nyumbani, Lea Toto,
and CRS, including the process for making administrative, financial, and
technical decisions is in need of clarification and these policies should be
documented so that the information is available to staff of all three
organizations.
The capacity building function of CRS was underutilized during the first phase
of the Lea Toto project, though the input that was provided by CRS was
deemed beneficial by both Lea Toto and CRS. More regular exchange
between CRS and Lea Toto would provide Lea Toto with increased technical
and capacity building input.
Observations:
Development of a steering committee is recommended, consisting of
representatives from Nyumbani, the Board of Directors, CRS, Lea Toto, and
USAID. The committee could perform an important role in clarifying
administrative and programmatic relationships and providing continued
technical oversight to the Program during its second phase. Functions of the
steering committee might include:
• Review current technical strengths and gaps among Lea Toto staff
and identify requisite quali'flcations and experience needed to
complement current available staff expertise
• Clarify administrative relationships between CRS, Lea Toto and
Nyumbani and document procedures for hiring consultants,
personnel recruitment and retention, accessing CRS technical
assistance, and other financial, administrative and technical
decisions.
• Encourage information exchange between Lea Toto and the Board
of Directors in order to avail Lea Toto of the potential support of
Board Members.
Personnel recruitment and retention: Optimal personnel recruitment and
retention of technical expertise among Lea Toto staff is limited by the project's
inability to hire staff at market rates. Nyumbani management has explained
that this is because Nyumbani's financial stability is weak; its major source of
funding is charitable contributions. Even though the project has funding to
reimburse personnel at higher rates, Nyumbani representatives feel that this
would create discontentment among Nyumbani staff working in other parts of
the organization. In addition, Lea Toto is viewed as a short-term project
whose funding may not be sustained in the long run. However, the
assessment team is of the view that for Lea Toto to attract, recruit and retain
competent staff, salaries for key staff positions should be more competitive.
14
3.4 Monitoring and Evaluation
Lea Toto utilizes a tracking system to monitor a series of process indicators.
Progress with regard to these indicators is monitored and included in reports
on a regular basis. Lea Toto staff also maintain files on all beneficiaries from
which further data is available, though not used for reporting purposes and,
therefore, not tabulated nor analyzed. As mentioned previously in the
section describing observations related to Objective 1 (physical care of 200
HIV+ orphans), the Program is providing care to many more children and
adults than are currently renected by the indicators.
Current monitoring is limited to process indicators such as the number of
children enrolled in the program, the number of CHWs trained and the
number of families visited. There is currently no system in place to evaluate
the effectiveness of the activities implemented, such as whether caregivers
are correctly utilizing medications or whether CHWs are including information
learned during training sessions into their community work. In addition, the
current indicators concentrate on measuring outputs toward the achievement
of Objectives 1 and 2, but are not reflective of outputs that would lead to the
achievement of Objectives 3 and 4.
Observations:
Following a re-assessment of the Lea Toto objectives, a monitoring and
evaluation plan could be developed through support of a process by which
the staff and community members involved in the activities identify
information that would be useful to them. Information collected on a regular
basis can be used to inform those involved whether they are accomplishing
what they have set out to accomplish. Data collected should be simple,
practical, and useful. Given an opportunity to analyze this information on a
regular basis, program implementers can use the data to inform themselves
whether they are "on the right course" toward meeting their objectives or
whether there are problems that need to be addressed that might necessitate
a re-consideration of program activities. Consideration should be given to
identifying "outcome" as well as "output" measures. The latter will inform the
staff if they are doing the activities that they set out to do, and the former will
inform them whether those activities are, indeed, achieving their objectives.
For example, the number of training sessions (output) to caregivers will inform
the Program that the intended work is being conducted and the number of
caregivers appropriately providing medications to HIV+ children (outcome) will
inform the Program of the success of the training.
15
Measuring "impact", such as the change in disease progression, would be
extremely difficult for the Lea Toto project. For example, the children involved
in the program may experience opportunistic infections that are less severe or
less frequent, but estimating change with the use of medically-based
measurements is likely to be unrealistic. In addition, without a comparison
group of HIV+ children, at the same stage of the disease and without LeaToto
intervention, the "impact" measured could not be attributable to Lea Toto
project interventions. Therefore, it may be more feasible for the Lea Toto
monitoring and evaluation plan to Iirnit its focus to "output" and "outcome"
indicators.
3.5 Potential contributions to care of ave
The Lea Toto project provides medical care to HIV-infected children and their
families and supports caregivers to care for these children in the community.
The evaluation team could identify no documentation of similar programs
neither in Kenya nor in other parts of the world. Lea Toto offers a unique
model that has the potential to inform efforts that focus on children infected
and affected by HIV/AIDS on an international level. Experiences documented
and lessons learned will enable other programs to replicate approaches
identified by Lea Toto to work best; and it will enable other programs to avoid
pitfalls identified by Lea Toto in the process of implementing this
groundbreaking effort.
An important aspect of Lea Toto is that it is a community-based activity that
was launched by an institution-based program, Nyumbani Orphanage. As the
epidemic leaves millions of orphaned and otherwise vulnerable children in its
wake, the role of institutional care is continually being revisited. For example,
at the XIII International HIVAIDS conference in Durban, South Africa, in April
2000, USAID, UNICEF, and UNAIDS launched a process to develop an
international set of principles to guide programming for orphans and other
vulnerable children (See Appendix 7 - Principles). The participatory process
and the document that will eventually be produced are intended to accelerate
consensus building and provide guidance to sound, effective action at local,
district, national and global levels in developing and implementing initiatives
to address the needs of orphans and other vulnerable children in AIDS
affected areas. While the draft consensus document recommends
institutional care only in cases where there is no other option for children, it
suggests an alternative model for institutions which involves children's homes
that become resources from which to support community-based activities to
support children affected by HIV/AIDS in their own communities. Lea Toto
embodies the model set forth in the consensus document and, as such, has
much to offer in terms of how to make this type of model work in a way that is
optimal to meeting the needs of children affected by HIV/AIDS.
16
Coverage is of primary concern with regard to the role of different types of
models of care for children infected and affected by HIV/AIDS. Estimates are
that there are over a million orphans as a result of HIV/AIDS and other
causes in Kenya. Estimates from 1998 were that 90,000 children were living
with HIV/AIDS in Kenya (DCOF, 8/28/99). These numbers do not include
other extremely vulnerable children who are neither orphans nor HIV-infected.
Resources available to address the needs of these children must be utilized
as effectively and as efficiently as possible. The measure of Lea Toto's
potential contribution toward making a difference in the lives of the vast
number of children in need will depend on its ability to expand its reach.
Already, the program has expanded beyond the reach of its parent
organization. Whereas Nyumbani is able to support 65 children, at a cost of
approximately $US2,300. per child per year*, Lea Toto is budgeted to provide
care to 200 children at a cost of $US445. per year*. There is, of course, a
vast difference in the type of care provided. Nyumbani is an orphanage that
provides excellent and comprehensive care to its residents. Lea Toto can
provide only medical and some psychosocial care, but it does offer the
advantage of enabling children to continue to live in their communities with
family members.
There are a few potential scenarios by which Lea Toto might expand its
coverage and, thereby, its contribution to the care of the vast and growing
number of children in need in Nairobi, and even possibly, in Kenya.
• The first possibility is to continue running the Program in the same way it
is currently running, with Lea Toto staff responsible for managing and
implementing activities. Moving into the second phase of activity means
that investments have already been made in start-up costs (both in terms
of human and capital investments) so that the same amount of funding in
the second phase can be used to hire more staff to expand the reach of
the program.
• The second possibility is to adopt a more community-focused approach
whereby increased community ownership and involvement is fostered. If
more of the activities are taken over by community members, some staff
members become free to move to other areas of the city to initiate similar
activities elsewhere and thereby expand the base of operations and the
number of children receiving improved care.
• Another possibility is for Lea Toto to provide consultative services to other
organizations to enhance their ability to care for infected children among
their beneficiaries. Lea Toto has, in fact, already begun this type of
activity on a small scale. One of the orphanages in the area is caring for a
number of children, among whom are six HIV-infected children. Lea Toto
has trained the staff of the orphanage to care for these children, thus
preventing the children from being moved to another placement. There
are many organizations providing care to children affected by HIV/AIDS in
Kenya. Most, if not all, of these organizations do not have the expertise to
17
work with caregivers of HIV-infected children who are part of their
beneficiary population. Lea Toto could provide training and on-going
support to program implementers who otherwise would not be able to
address the special needs of these children as part of their community
efforts.
The Lea Toto evaluation conducted in May, 2001, was limited to data
collected from in-depth interviews, focus groups, observations expressed
during a stakeholder meeting, and a review of reports and other available
documentation. Based on this information, it is apparent that Lea Toto is
providing medical care and psychosocial support to HIV+ children and their
families that would not otherwise be available to those beneficiaries.
Opinions of interviewees is that children and their families are benefiting from
these activities.
Both staff and caregivers involved with Lea Toto report noticeable
improvement in the health of children under the care of the Program.
However, data is not available to measure the true impact of the activities on
the well being of children and their families. Therefore, the extent to which a
model of care such as Lea Toto can contribute toward improving the well
being of children infected and affected by HIV/AIDS remains unmeasured.
Operations research to measure this impact would provide this information.
However, until the time that such research is conducted, the contribution of
Lea Toto will continue to be measured in terms of the number of children who
have participated in activities that are facilitated through the Program.
3.6. Challenges/opportunities, Lessons learned
A major contribution that Lea Toto has to offer toward programming for
children affected and infected by HIV/AIDS in Kenya, as well as globally, is to
share the lessons learned in the course of implementing this unique model of
care. It is important to identify and document what works well and what does
not work. During its second phase of operation, Lea Toto will have the
opportunity to re-direct its efforts in light of the lessons learned during its first
phase. In this manner, the lessons will continue to emerge and will continue
to provide a source of learning to programs in other parts of the world. The
following are some of the lessons that have surfaced during the first 18
months of Lea Toto project implementation:
Addressing the needs of PLWHA and their families necessitates a holistic and
coordinated approach:
Lea Toto chose to work in Kangemi because it was an area, which lacked
other interventions focusing on the needs of PLWHA and their families. As
the staff continued to enroll beneficiaries and to gain an increased
understanding of their needs, they realized that they could not address those
needs single-handedly. The following gaps were identified:
• Care and support for children affected, but not infected, by
HIV/AIDS;
• Care and support for adults infected by HIV/AIDS;
• Voluntary counseling and testing for HIV/AIDS for adults;
18
• Income generating activities;
• HIV/AIDS prevention efforts;
• Reproductive health information and services.
Lea Toto, of course, cannot meet all these needs. Efforts to address these
gaps would necessitate a coordinated effort to develop and implement a
strategic approach involving community members and community
organizations that currently work within Kangemi, as well as those that might
be able to move activities into the area.
The effect of stigma on program implementation:
There is a great deal of stigma surrounding HIV/AIDS in Kangemi, as in many
parts of the world. Focusing exclusively on HIV+ orphans exacerbates the
stigma surrounding the Program and results in reluctance of community
members to make use of the services provided or to be associated with the
Program. Broadening the target of the activity may decrease stigma
associated with the Program and thereby increase the number of community
members willing to become involved with the Program.
Linking income generating opportunities with care for children:
Lea Toto identified the overwhelming economic needs among caregivers of
HIV+ children and attempted to address those needs through four different
types of interventions: business training; merry-go-round savings groups;
sale of used clothing; and handicraft production. None of these attempts was
successful at creating long-term economic opportunities for participants.
Given the dire economic environment in the area and recognizing that its own
expertise is in health and not economic interventions, Lea Toto recognized
that pursuing this course of action would be better addressed through linkage
with an organization that specializes in income generating activities.
Community-based yersus Community-owned:
Lea Toto is a community-based organization that was developed and
implemented by "outsiders" to support community members. As such, it is
viewed as a service organization through which community members can
obtain needed medical care and other assistance. Community involvement in
provision of care to its members is minimal and, therefore, developing
sustainable community approaches has been met with little success.
However, input from the stakeholders meeting and focus groups facilitated
through the Lea Toto evaluation process provided the Program with a better
understanding of the potential and the willingness of caregivers to become
more actively involved in Program activities and outreach. In addition, though
the Program is in an urban setting which offers particular challenges to
mobilization due to fragmentation within the cornmunity, recommendations
from the stakeholders meeting suggested a process to consult more with the
community that does exist within Kangemi and to work with the community in
a way that responds to its particular nature within Kangemi.
19
Linking Care and Support with Prevention Activities:
Lea Toto's mandate and expertise do not focus on disease prevention or on
family planning education. However, caregivers and family members of the
Program beneficiaries who are HIV-negative are at risk of acquiring HIV;
those who are HIV+ are at risk of transmitting the disease to others; and
pregnancies among HIV+ caregivers occur without access to family planning
information. Though disease prevention and family planning are not primary
objectives of the Lea Toto project, it would be an important contribution for
the Program to link with other projects that can provide reproductive health
services to Lea Toto beneficiaries.
3.7 Recommendations
The following recommendations summarize the observations presented in the
previous sections and are the result of extensive discussions among the
members of the evaluation team, based on observations, interviews, and the
stakeholders' meeting.
Continued support to Lea Toto project:
Lea Toto is providing care to 148 HIV+ children and their families and has the
potential to extend its coverage to include a larger number of beneficiaries.
The staff of Lea Toto has progressed through the start-up phase and has a
great deal of expertise, dedication, and an expanded understanding of how to
proceed toward attaining its goal of improved community care in Kangemi.
Therefore: Continue to provide funding to Lea Toto to support its second
phase of operation. ,
Targeting activities to HIV+ orphans:
Limiting programmatic focus exclusively to HIV+ orphans:
• Increases stigma;
• Inhibits beneficiary enrollment;
• Limits activities to a small proportion of children identified by the
program to be affected by HIV/AIDS;
• Underestimates the impact of the Program on HIV+ children living
with a parent (non-orphans);
• Underestimates the impact the Program has on other children who
are family members of infected children.
Therefore: Discuss and re-consider if target population must remain
exclusively HIV+ orphans.
20
Building sustainable community responses:
The current approach to the community does not facilitate community
ownership and participation:
Therefore: Re-consider the community approach to be taken by Lea Toto and
provide the technical expertise and support necessary to achieve increased
community ownership and involvement of community members - including
enhanced coordination and collaboration with community based organizations
in Kangemi. _
Enabling a holistic approach to care and prevention:
Project beneficiaries are in need of care and prevention support beyond that
which Lea Toto can be expected to provide.
Therefore: Initiate strategic planning with potential partners in the
community and outside of the community to increase access to:
• Care and support for children affected by HIVIAIDS;
• Care and support for adults who are HIV+;
• Voluntary Counseling and testing;
• HIVIAIDS prevention efforts;
• Reproductive health information and services.
Organizational Capacity:
The capacity building function of CRS was under-utilized during the first
phase of activities.
Therefore: Facilitate access by Lea Toto to on-going technical
assistance by CRS and reflect this relationship in the wording of the contract
guiding the next phase of activities.
Technical capacity with regard to community mobilization, counseling, and the
presence of technical leadership was identified as a weakness of the Lea
Toto project.
Therefore: Assess current Lea Toto staffing and develop a plan to
improve technical capacity and provide technical leadership.
Financial management and reporting:
Lea Toto's current financial reporting system is reliable and efficient.
Therefore: Decrease monthly submission of source documents, replacing
this requirement with periodic on-site third party document reviews.
21
Budget:
Budgeting for the first phase of Lea Toto did not have the benefit of technical
input because it was a newly initiated activity.
Therefore, Utilize technical input and recommendations from Lea Toto
and CRS staff in developing the budget for the next phase of funding.
Program management and reporting:
Administrative roles and relationships between Nyumbani, Lea Toto, and
CRS are unclear.
Therefore, convene a steering committee consisting ofrepresentatives
of COGRI, Nyumbani, Lea Toto, CRS, and USAID whose responsibilities
include development of written policies delineating the roles of each
organization with regard to administrative, financial and technical decision
making.
There remain gaps in the technical leadership and technical expertise that will
be necessary to expand Lea Toto's progress toward its goals and objectives.
Therefore, Lea Toto and CRS, or the Steering Committee should review
technical needs of Lea Toto and develop plan ofaction to address those
needs.
Monitoring and Evaluation:
Current monitoring and evaluation plan does not address all the Lea Toto
objectives and does not utilize a process to identify indicators and collect data
that is optimal for utilization by Lea Toto staff.
Therefore: After the objectives for the next phase of operation have been
identified, initiate a participatory process by which Lea Toto staff, in
conjunction with community partners and facilitated by CRS, identifies data to
be collected on a regular basis that will contribute to monitoring ofactivities
and learning what works and does not work among Program activities.
Regularly scheduled, participatory, self-assessments would provide an
opportunity for Lea Toto to re-evaluate the effectiveness ofits program
activities and to identify changes that are needed to achieve the desired
objectives.
3.8 Conclusions I The Way Forward
The needs of children who are infected and otherwise affected by HIV/AIDS
are vast; are continuing to grow; and will remain exceptionally high for at least
two or more decades. The response must be long-term and it must include a
combination of different types of approaches. Lea Toto offers one such
approach. As a community-based program that has been initiated and
supported by an orphanage, it provides an intervention model that has
potential to help to re-define the role of institutions in AIDS affected countries.
In addition, the provision of community-based medical care to HIV-infected
children and their families is also unique in its focus and approach. Being in
the forefront of these types of programs, Lea Toto does not have the benefit
of learning from the experience of others who have come before. Instead,
Lea Toto's continued growth toward achieving its objectives within Kangemi
22
will provide lessons to be learned by other organizations that follow in its
footsteps.
A focus of the Lea Toto evaluation has been to identify what is working and
what is not working. Even more important has been the role of the evaluation
team in stimulating discussion about how to make things work better. The
evaluation team provides recommendations for the next phase of Lea Toto
operations. It will be up to the Lea Toto staff, with technical support from
CRS, to try new approaches toward meeting their objectives; to continue to
assess their progress and modify their activities when necessary; and to
share lessons learned with others who have similar objectives in other places.
There is a great deal of dedication and commitment among the staff of Lea
Toto, CRS, and Nyumbani. It is this dedication that will be the force that
continues to drive their efforts toward their shared goal -improved care and
support for the growing numbers of children affected by HIV/AIDS in Kenya.
23
*NOTE: Cost per child calculations:
Lea Toto: Based on "Project Budget Status and Advance Request Form
3/1-3/31/2001
Options: Could be based on:
1) Total actual costs for 18 months, divided by # children served;
2) Total actual costs, minus car and kitchen (one-time costs only), divided
by # children;
3) Total budgeted costs for 2 years, divided by 200 children
4) Total budgeted costs for 2 years, minus car and kitchen, divided by
200 children.
The number in this document represents #4: Total budget ($US253,560)
minus car and kitchen ($US75,409) = $US178,151, divided by 200
children = $US890/child/2 years = $US445.1child/year. __
Limitations to this choice of calculating costs/child: Does not represent
ACTUAL costs, rather only budgeted costs; Assumes care of 200 children
per year, which is more children than actually served; Does not include
costs of drugs, which are currently being paid for by CRS; Does not
include number of family members, in addition to the HIV+ children, who
are receiving services.
Nyumbani: Calculations based on:
Direct cost per child per year = $US582
Personnel and administration =$US1 ,725
Total costs per child per year =$US 2,307
This calculation assumes that "personnel and administration" does not
include fixed costs such as cars, building construction, etc.
This calculation does not include $US343/child/year spent on education,
since Lea Toto does not offer education expenses
This calculation DOES include medication costs, whereas this cost was
not included in the Lea Toto calculation, even though medications are
provided by Lea Toto.
CARE MUST BE TAKEN WHEN COMPARING COSTS/CHILD FOR Lea
Toto and Nyumbani because services provided are so different.. (like
comparing "apples to oranges")
24
1. Appendix I: Lea Toto Evaluation Scope of Work (SOW)
INTRODUCTION
In 1999, through a field support transfer to BHRlPVC to Catholic Relief Services
(CRS), USAID/Kenya began support to the Children of God Relief Institutel to
implement a community-based program (known as Lea Toto) in the Kangemi
area. Under the program, CRS is helping to strengthen the capacity of the Lea
Toto program to help families with HIV positive orphans receive physical care,
psychological support and essential medical supplies. The program also hopes
to help the Kangemi community, a slum area of Nairobi, identify and establish
sustainable community strategies to enable the community to cope with the
needs of AIDS orphans. Finally, CRS hopes that this program will improve the
organizational capacity of the Lea Toto program to manage community-based
support to orphans.
The assessment will review program activities over the project period August
1999 to July 2001. The findings of this assessment will help CRS and Lea Toto to
strengthen a second phase of the program.
BACKGROUND
It is estimated that 13.3 percent of the adult population in Kenya is living with
HIV/AIDS with the prevalence rate generally higher in the urban areas. One of
the impacts of AIDS deaths to young adults is an increase in the number of
orphans. It is estimated that the number of children who had been orphaned by
AIDS in Kenya by the year 2000 was 850,000 and that this figure will go up to 1.5
million by 20052
• These estimates include only children less than 15 years old
who have lost either their mother or both parents as a result of AIDS. The
number of children made vulnerable by HIV/AIDS is much larger and includes
children whose father has died; those who are living with and often caring for a
chronically ill parent; those who are older than 15 years old; and children living in
households where resources -both financial and psychosocial- are severely
strained as a result of caring for ill family members and supporting increased
numbers of dependents.
These children often lack the proper care and the supervision they need. The
death of one or both parents leads to a number of sociological, economic and
psychological problems. Orphans are vulnerable to a number of these problems
such as malnutrition, dropping out of school, the loss of physical and social
security as well as the lack of parental attention and supervision.
I The Children ofGod ReliefInstitute runs the Nyumbani orphanage for HIV positive children in Nairobi.
USAID is providing funds through CRS to support the Institute's community based care program known as
Lea Toto in a slum area ofNairobi.
2 Source: AIDS in Kenya, NASCOP,1999
Appendix 1-1
The Lea Toto program targets children who have lost both parents and are HIV
positive. There have not been many programs in Kenya dealing with the care and
support of orphans living with HIV/AIDS within the community. This assessment
will help document some of the experiences and lessons learned over the past
two years.
The overall goal of the Lea Toto program is to improve the capacity of the
Kangemi community to provide holistic care within the family setting for HIV+
orphans living in these communities.
The following are the objectives through which this goal will be achieved:
• By the end of the project, 200 families with HIV+ orphans will have received
physical care and essential medical supplies to alleviate their suffering.
• By the end of the project, psychological and moral support will have been
provided to 200 HIV+ orphans and their families.
• By the end of the project the Kangemi community will have identified or
established six sustainable community strategies to enable the community to
cope with the needs of AIDS orphans.
• To improve the organizational capacity of the Lea Toto Program to manage
community based support for orphans.
SCOPE OF WORK
a) Purpose:
USAID/Kenya, in collaboration with CRS and Nyumbani will undertake an
evaluation of the Lea Toto program to assess:
• The progress made towards achievement of project objectives.
• The financial accountability and reporting on program funds.
• The current and potential contribution of this type of program to developing
sustainable community-based care and support of HIV+ orphans and the
families that are caring for them.
• The current and potential role of this type of program to contribute to
meeting the needs of the children affected by HIV/AIDS in Kenya.
• Challenges and lessons learned.
• Key areas of focus for the future.
Appendix 1-2
b) Participants and audience for the evaluation
A team composed of a team leader, two USAID/Kenya staff, one USAIDIW staff,
one CRS staff, one Lea Toto staff and one Nyumbani staff will undertake the
assessment and produce an evaluation report. This will be a collaborative review
and will draw on views and experiences of health professionals currently working
in community-based care of HIV infected and affected people in Kenya. The
audience for this evaluation includes USAID/Kenya and USAIDlWashington, the
Government of Kenya, CRS and Lea Toto.
c) Issues to be addressed by the evaluation team
The following are key issues to be addressed by the evaluation team. The
evaluation will include, but not be limited to, the tasks listed as bullets under each
of the issues.
o Achievement of goals and objectives
• Assess the contribution of the project towards meeting the needs of
the targeted HIV positive orphans in Kangemi and the families in
which they live.
• Assess the extent to which the project developed caretakers' ability to
care for HIV positive children.
• Assess the results of the community mobilization process initiated by
Lea Toto to develop and implement strategies to enable the
community to cope with the needs of AIDS orphans.
• Assess change in organizational capacity of the Lea Toto program to
manage community-based support for orphans.
o Financing, management and reporting mechanisms of Lea Toto
and of CRS.
• Review the effectiveness of current financing mechanisms between
CRS and Lea Toto and between CRS and USAID.
• Review the reporting mechanism from Lea Toto to CRS and from
CRS to USAID.
• Identify the key management issues/constraints affecting 'financing
and implementation of the Lea Toto program.
• Review the Lea Toto organization structure and make
recommendations that can make it more fiscally effective.
• Review the financial reporting system, the monitoring and evaluation
system and make recommendations for change, if appropriate.
Appendix 1-3
o Current and potential contribution to community-based care of
HIV
positive children and other children affected by HIV/AIDS
• Assess the Lea Toto strategic approach and its potential contribution
to community based care of children affected by HIVAIDS.
• Assess the role of the Kangemi medical clinic in providing services to
the Lea Toto program, and its current and potential contribution to
addressing problems facing HIV positive children.
• Assess the process of establishing caregiver groups and how these
groups contribute to improving support for HIV positive children within
the community.
• Assess the process of community mobilization, the creation of
community "safety nets" and the extent to which these activities
contribute to community support of HIV positive children.
• Identify the current coverage of the target population and the potential
and cost of scaling up to reach an increased proportion of the target
population.
• Assess the contribution of the project to develop capacity among Lea
Toto staff and capacity of the community to contribute to a
sustainable response.
• Review and assess key aspects of the Lea Toto program with the
greatest potential for sustainability.
o Challenges/opportunities and lessons learned
• What has been the process to develop and define community
participation in the context of the Lea Toto program?
• What are lessons learned and what are the implications for
community-based care of HIV positive children and other children
affected by HIV/AIDS in Kenya?
• What opportunities exist upon which to build a more effective
community-based care program for HIV positive children?
• What are the implications (slJstainability? Cost? etc.) of lessons
learned by the Lea Toto project for replication of this model of
intervention in other communities?
o What should be the key areas of focus for the future?
Appendix 1-4
d) Proposed activities of the team
The evaluation team will undertake the following activities:
• Meet with USAID/Kenya staff and project staff at eRS, Lea Toto and
Nyumbani._ The team will hold at least two briefing meetings for USAID staff.
On arrival, the team will meet with OPH to clarify mission perspectives,
activities and priorities on Lea Toto. The team will present proposed
organizational plans for undertaking the evaluation. A final briefing will be
made near the end of the TDY at which time a draft report will be submitted.
Discussions will be held with CRS ,and Nyumbani staff.
The team will meet with Nyumbani staff and review Nyumbani/Lea Toto
reports. Specifically the team will seek an understanding of the referral role
Nyumbani plays to HIV+ children referred from Lea Toto and the role of St.
Joseph's dispensary in Kangemi with a view to documenting lessons learned.
• Review relevant documentation. The team will review the CRS/Lea Toto
project studies, status reports and other documents. In addition, the team will
review USAID HIV/AIDS strategy documents and other reports related to
community-based programs in Kenya.
• Meet with stakeholders. The team will collect information through interviews,
discussions or focus groups with key stakeholders, including, but not limited
to community leaders, National AIDS Control Council staff, MOH, other
USAID-funded agencies working in HIV/AIDS such as IMPACT and COPHIA.
• Make site visits. The team will meet with project staff, health workers, and
families at Kangemi.
• Stakeholders' workshop. A one-day meeting with stakeholders will be held
to present findings of the evaluation and to provide a forum for discussion that
will feed into the recommendations of the report.
The outcome of this assessment will be an evaluation report. The team will be
responsible for completion of the evaluation report synthesizing findings and
recommendations. The team leader will be responsible for completing the report
on time and submitting it to OPH.
Appendix 1-5
The final report should include the following sections:
I. Executive summary
II. Background
III. Summary of key issues
IV. Conclusions
V. Recommendations
VI. Annexes
e) Level of effort
The level of effort will be as follows:
Desk review
Team briefing/orientation
Interviews/discussions in Nairobi
Planning Stakeholders meeting
Stakeholders' meeting
Completion of written report
Total number of working days:
f) Administrative and logistical arrangements
2 days
2 days
4 days
1 day
1 day
3 days
13 days
• Relationships. The team leader will report directly to the Chief, Office of
Population and Health. The team leader will work closely with the OPH's
Technical Advisor in AIDS and Child Survival, Child Survival Program Officer,
and other OPH staff. As necessary, supplementary guidance will be provided
by the Executive Officer, USAID/Kenya.
• Completion of deliverables. The contract will be considered successfully
completed when the team leader submits to USAID/Kenya the document
described in 111-0, terms of reference. Two paper copies of the final
document shall be delivered to the Chief, OPH. In addition, the team leader
will submit an electronic copy of the entire document in Word on a 3.5"
diskette. This document must be submitted no later than two weeks after the
completion of the stakeholders meeting.
• Office space and equipment.
assessment team
•
CRS will provide office space for the
Appendix 1-6
2. Appendix 2: Lea Toto Evaluation Team Members
1. Linda Sussman
2. Jane Muita
3. Yvonne Ferguson
4. Wamuyu Manyara
5. Caroline Masterly
6. Nicholas Make
7. Joseph Indigo
8. Victor Masbayi
USAID Washington
UNICEF
CRS
CRS
Lea Toto
Nyumbani
USAID Kenya
USAID Kenya
Appendix 2-1
3. Appendix 3: Methodology
The Evaluation team consisted of eight members (see Appendix 2 - Evaluation
team members), representing Lea Toto, Nyumbani, CRS, UNICEF/Kenya,
USAID/Kenya and USAIDlWashington and took place between April 30 and May
11,2001. All participants were actively involved, and consensus was sought and
achieved for joint action taken by the team.
The process began with a meeting of the team to:
• Identify team member expectations and
• Identify potential interviewees
Questionnaires development occurred through brainstorming sessions and were
based on:
• Team member expectations for the evaluation; and
• SOW objectives.
All interviews were conducted by at least 2 team members. Interviews included:
• Individual interviews
• Focus groups (Caregivers; CHWs; Lea Toto staff)
• Stakeholders meeting (May 10)
The financial and management assessment included a review of:
• Lea Toto and Nyumbani's organizational structure;
• Accounting systems
• Procurement regulations;
• Personnel and travel policies
• Non-expendable procedures
• Budgeting and cost controls
• Reporting procedures.
Daily meetings of the evaluation team were held at 4:00 p.m. to:
• Share daily information
• Identify interviewees
• Plan and determine logistics for team interviews
• Develop and review Questionnaires
• Develop evaluation document outline
• Discuss evaluation findings, especially issues related to:
- Lea Toto programming
- Constraints and Options for future programming
Management and budget issues
Appendix 3-1
4. Appendix 4: List of Interviewees
Lea Toto:
Caroline Matsalia, Assistant Program Manager
Joseph Kamau, Program Director
Susan Ngugi, Social Worker
Ruth On'garo, Nurse
Dr. Aluvaala, Doctor
Focus group with Lea Toto staff
CRS:
Wamuyu Manyara, Project Officer - AIDS unit
Yvonne Prempeh-Ferguson, HIV/AIDS Manager
Jean Marie Adrian, East Africa Regional Director
Jane Mumo, Financial officer
Judy Ojwang, Finance Manager
Nyumbani
Nicholas Makau, Program Manager
Father D'Agostino, Nyumbani Director
Protus A. Lumiti, chief Manager
Sister Theresa, Matron
Sister Mary Owens, Treasurer
Dr. Maringo, Board member and baseline survey consultant
Community Beneficiaries/Partners
3 Focus Groups with Caregivers
2 Focus Groups with Community Health Workers (CHW)
Attended CHW training session
Community Opinion Leaders:
Fr. Emannual, Assistant Parish Priest-S1. Joseph Church
Mr. Karanja, Kangemi Chiefs Office
Mr. Mbutia, Kangemi Chiefs Office
Community Organizations
Francis Nelegwa, Clinical Nurse, S1. Joseph Dispensary
Sr. Sarah, Nurse, S1. Joseph Dispensary
Anne Owiti, Director, Kicoshep
Mr. Julius Kaberere, Deputy Director, Kenya Alliance for Advancement of
Children (KAAC)
Ruth Wangare, Training and Counseling, KAAC
Annastacia Muli, KWEC
Government
Karen Ogoti, Children's Department
Muthoni Mwithiga, NAAC
NASCOP (meeting cancelled by NASCOP)
USAID: Dana Vogel
Neen Alrutz
Cheryl Sonnichsen
Victor Masbayi
Appendix 4-1
5. Appendix 5: Stakeholders Meeting Held May 2001.
(a) Introduction
A stakeholder meeting was held with 24 participants. The organizations
represented at the meeting included the Nyumbani Orphanage, Progress 2000,
USAID, CRS, St Joseph's Parish, UNICEF, NACC, Family Health International￾IMPACT, Pathfinder International-COPHIA and, Lea Toto.
(b) Purpose of the meeting
The purpose of the meeting was to share findings of the assessment with
stakeholders and hear from them how some of the key challenges to program
implementation could be addressed.
Four key challenges had been identified by the assessment, and stakeholders
were asked to discuss these in four groups. The four issues were community
mobilization and ownership; targeting HIV+ children vs all vulnerable children;
disclosure and acceptance and the role of programs targeting HIV + children in
addressing OVC's.
(c) Group Reports
Group 1: Challenges and strategies in mobilizing communities and
developing ownership in an urban setting
The group discussed and presented what they saw as community mobilization
strategies that have worked for other programs and suggested that these could
be applied to Lea Toto. These were listed as follows:
• Participatory urban appraisal/focus groups.
• Community involvement in mapping and peer education.
• Organizing around a specific purpose e.g. money-making venture.
The group also discussed how to mobilize the community in transient populations
and concluded that one should organize around existing social groupings e.g.
rellgious, tribal, merry-go-rounds etc.
The group concluded that technical inputs such as exchange visits, technical
assistance through caos, and formalizing relationships with district, locational
and government departments are necessary to conduct this process.
Participants who had used these strategies in other programs proposed that in
an urban setting such as Kangemi a lack of social cohesion and trust due to
movement of people can be a key problem and that a strong referral network is
necessary. Further, a two or three year project is too short to ensure community
mobilization and that community mobilization should be done through local
CBOs.
Appendix 5-1
The group concluded that while community ownership and involvement in an
urban slum where poverty is pervasive can be difficult to achieve, one should
build on existing programs; e.g. merry-go-rounds and church networks. Financial
Participation should be encouraged no matter how small and a capacity to
handle funds should be developed.
Partners can assist in this process of community mobilization by making
resources and technical assistance available.
Group 2: The challenge of targeting HIV+ children V5. all vulnerable
children.
This group discussed and agreed that the characteristics of vulnerable children
would include:
• Child under 18 living near high-risk situation
• Orphan - partial, total, virtual
• Child affected by AIDS
• Either parent sick/ailing
• Child head of a household
• Child soldier/prostitutes/laborers
• Exploited/abused children
• HIV + child
• HIV negative child
The group also discussed and listed the needs of vulnerable children as follows:
• Education
• Health care
• Nutrition
• Love and support
• Recreation
• Security
• Legal protection
• Socialization /good parenting
• Shelter, food, clothing
The group concluded that HIV+ children would have all these needs as well as
acceptance of their sero-status and special medical care due to compromised
immunity.
Appendix 5-2
The group discussed and listed advantages and disadvantages of focusing only
on HIV+ children.
Advantages Disadvantages
Ability to provide specialized care Targeting may lead to more stigma
More access to target group Slow community mobilization
Efficient use of scarce project resources
Encourages acceptance of HIV+ children
Ability to build support for one another
Advantages of expanding support to Disadvantages of expanding support to
eve eve
Easier community mobilization Inadequate resources to meet the needs
Increased number of children participating in More complex targeting in heterogeneous
the project groups
Harder to monitor
Potential for abuse of services
This group recommended targeting HIV + children but for Lea Toto there is a
need for stronger linkages, collaboration, and partnership. The group also
recommended that that Lea Toto progran1 needs more prevention and BCC
prograrTlming and better empowermenUcapacity building of the community
(including enabling environment, fund raising mechanisms etc).
Group 3 Stigma attached to disclosure and acceptance
The group concluded that stigmatization is due to the fact that HIV/AIDs is
associated with sexuality, loose morals and that there is a lot of distortion and
misconception about HIV/AIDS. It was suggested that health workers focus on
changing the message by giving hope and avoiding sentences like " Break the
silence".
Strategies that can increase acceptance were listed as follows:
• De-segmenting the community as appropriate
• Targeting people at their own personal level
• Using an education approach
Address feelings and fears
Personal contribution
Encourage knowledge of HIV status
• Promote VCT to become community based (services to be available at all
levels).
• Encourage post-test clubs
• Encourage those testing positive to go public
• Skills building
• Provision of support
• Integrate provision for basic immediate needs into wider program
(empowerment to meet one's own needs.
• Promote collaboration and create linkages
Appendix 5-3
Group 4: The potential role of programs targeting HIV + children in
addressing ave's.
The group identified different types of organizations i.e. those that operate in a
rural setting; institution based types; fundraising organizations; community based
prevention types in an urban setting; those that provide technical support and
partnerships. The group felt that programs targeting HIV+ children could make a
contribution to ave in general by being a source of information, stimulating
passive contributors and helping to develop a capacity for information and
support. Some key strategies to achieve this could be encouraging active
participation of local teams in networking and sharing information through
existing structures such as churches, welfare associations and women's groups
and developing linkages with other organization working in ave.
To mobilize communities and share information organizations could use
publications such as newsletters, journals, websites, network news, evaluations
findings as well participating in forums.
Appendix 5-4
6. Appendix 6: Lea Toto Evaluation Questionnaires
A. Questionnaire for Lea Toto, CRS, Nyumbani
1. Meeting the needs ofHIV+ children in Kangemi families:
What are the needs of the children in general in Kangerni?
What services, other than Lea Toto, are available for vulnerable
children in Kangemi?
What is the magnitude of HIV among children in Kangemi?
What are critical needs of HIV+ children?
What services are available to other children that are also available
to HIV+ children?
Were they there before Lea Toto? Are they new? When did they
begin in Kangemi?
What needs are being addressed through Lea Toto activities and how
How are children and families identified and prioritized to participate
in Lea Toto activities? (get criteria for inclusion)
How many children have been reached with:
medical, clinical, nutritional care, referrals for further management
How has the well being of HIV+ children and their families changed
as a result of Lea Toto (what is the documentation for this change?)
What are the Constraints (financial, human capacity)?
Recommendations
2. Development of caregiver ability to care for HIV+
_How were the children being cared for before caregivers came into place?
Data (profiles) who are the caregivers of these children?
What are their characteristics?
How are they identified?
What Lea Toto is doing for caregivers and why?
What would Lea Toto like do that they are not doing now?
Are there other stakeholders working to strengthen the capacity of the
caregivers
With regard to caregiver groups, describe:
The objectives of the caregiver groups (written and stated);
The process by which caregiver groups have been established;
Current status (coverage, meeting frequency, etc);
Specific activities of the groups;
External support received to caregiver groups;
Internal resources that members contribute;
The impact of these activities on the support of HIV+ children -
both directly and indirectly;
Degree to which the groups have achieved their objectives
Constraints
Recommendations
Appendix 6-1
3. Results of the community mobilization process
Describe the goals and objectives of community mobilization process
Describe the approach used in mobilizing the community
At what level has the community been involved in the mobilization
process?
What are the outcomes of the community mobilization?
What are the specific sustainable strategies that have been identified
as a result of community mobilization
Which of the strategies have been implemented? (get supporting
documents)
Challenges to community mobilization process
Challenges to implementation of strategies
Given an opportunity how would they do it differently?
4. Organization capacity of Lea Toto to manage community support
for orphans
Describe the Lea Toto funding prior to USAID funding, including the
objectives and geographic area covered.
What is the current status of the non-USAID funded outreach
program?
What is the relationship with the USAID-funded project?
Since the beginning of the USAID funding, describe changes and
current level of:
Human resources (compare current human resources to that idenHfied in
the proposal)
Infrastructure
Management capacity
Space/ Equipment
Technical capacity
Since USAID funding, how has the program changed?
Are there any differences in types of services, difference in
coverage?
With regard to reporting by Lea Toto...:
What is the accuracy?
Timeliness
Quality of content
Appendix 6-2
5. Financial Reporting
(a) Purpose of the grant and how it will be achieved
(b) Grant date and PACD
(c) Amount obligated and disbursed to date
The purpose of the assessment is to report in writing on the
acceptability of the accounting system and records, personnel
organization, and controls in place at (Grantee) in regard to USAID
grant funds.
Methodology
Test the fitness of: (a) the source documentation used to bill USAID,
(b) Grantee's personnel and their capabilities in regard to managing
the grant funds, and (c) documented evidence of internal controls put in
place to govern the use of the funds, for example, procurement
procedures and check approval authorities. In addition, check
compliance with the terms of the grant agreement and, assess
progress made in implementing the program in relation to time and
funds expended.
If conditions are found to be unacceptable at the offices of the Grantee,
then the Mission must consider suspending the payment of grant funds
until corrections, as prescribed, are made.
Detailed Assessment Steps
I. Organizational Set-up
The assessment objective here is to document and evaluate the control
environment; and the capacity of the Grantee's personnel to
implement its program and manage USAID funds.
(1) Determine the names, titles and responsibilities of all the
registered officials. Which of these officials have overall
responsibility for the day-to-day running of the organization?
(2) In regard to personnel, obtain an organization chart and other
written procedures to show the responsibilities and reporting lines
for the Grantee. In regard to the Finance Department, document
the number of staff, their qualifications/experience, and reporting
lines. Determine whether accounting duties are adequately
segregated. For the whole organization, determine whether
there are written job descriptions.
(3) Obtain information on the physical location of the office, contact
address and phone numbers.
Appendix 6-3
II. Financial Management System:
The assessment objective for this area is to confirm the existence of an
internal control system that ensures a separate and accurate
accounting for USAID funds; collects or prepares and files source
documentation of all payments and receipts; safeguards assets; and
produces accurate reports on time and in the required format.
(1) Ensure that (Grantee) maintains an up to date cashbook/bankbook and
general ledger for USAID funds.
(2) To confirm the completeness and accuracy of the equivalent of
(amount in $) disbursed to (Grantee), ensure that all receipts
from USAID were promptly recorded in the cashbook and then
banked intact. Trace these amounts to the bank statements.
Also, trace the cashbook totals for the respective months to the
general ledger.
(3) To confirm the validity and accuracy of payments, select a sample made
up of different expense categories, including large and small amounts, and
ensure that:
(a) A pre-numbered and approved voucher supports each payment;
(b) Duties in the payment process are segregated such that
different stages are handled by different people and then
approved by the supervisor, or the designated official.
(c) Support documentation exists for each payment voucher;
amounts paid and other details in the pay records match
the source documentation; and
(d) Each paid voucher is stamped "PAID" to avoid duplication.
(4) Confirm the existence of the following controls in regard to the recipient's
banking procedures:
(a) A separate bank account is maintained for USAID funds;
(b) A monthly bank statement is received and a reconciliation between
the cashbook and the bank
statement performed on a monthly basis;
(c)Each bank reconciliation is approved in writing by a
supervisor and the supervisor follows up to ensure
reconciling items are cleared in succeeding months;
(d) The checkbook is in the custody of a responsible official;
(e) The names of the authorized signatories for the bank
account are minuted; and
(f) Tests of cancelled checks (if available) show that
appropriate signatories and pay data are on these checks.
Appendix 6-4
(3) To confirm the accuracy of the banking system select a number of bank
reconciliation's and:
(a) Verify the reconciling items by tracing them to the
cashbook and ensuring that they don't appear in the
bank statement and vice versa;
(b) Trace all transactions from the cashbook to the bank statement
for 2 or 3 months. Ensure that all transactions that do not
appear in the bank statement, and vice versa, are shown as
reconciling items;
(c) Check the footing and cross-footing of the cashbook for the
months selected in (a) above and trace the totals for each
month to the general ledger; and
(d) Consider the need to obtain confirmation of the current
bank balance direct from the bank.
III. Procurement and Travel Procedures
The assessment objective is to confirm whether the Grantee's
procurement and travel advance/reimbursement procedures satisfy
USAID requirements.
(1) Select a sample of large procurements from the cashbook and:
(a) Determine whether competitive procedures were applied
and whether there was segregation of duties in the whole process;
(b) Review supporting documentation and ensure that proper
payment procedures were followed;
(a) For instances where the vendor is one of the Grantee's
officials or a related party, determine the circumstances
behind the procurement;
(b) assess the reasonableness of the amounts paid and
discuss with the Grantee's officials as appropriate; and
(e) discuss any frequent and large procurements especially if they
are always from the same source.
(2) To determine whether the travel and vehicle operations
procedures result in reasonable and allowable costs in line with
applicable cost policies; include a sample of this expense
category in test II (3) above and confirm that:
(a) Payments were for official travel and were duly approved in
advance;
(b) Payment procedures agree with those detailed in test 1\ (3); and
(c) Travel advances were approved in advance and liquidated in a
timely manner.
Appendix 6-5
III. Reporting
The assessment objective is to ensure that the Grantee complies with
relevant grants, laws and regulations
(1) Confirm compliance by reviewing reports submitted by the
Grantee including the one for the period ended (date of latest period) .
(2) Alternatively, determine reasons for non-compliance.
(3) Select a sample of these financial reports and agree all amounts
back to the source documents. This test can be achieved by
using the same 2 or 3 months that were tested in step II, 5 (b)
above.
(4) Ensure the reports are submitted in the agreed format and in a
timely manner.
IV. Audit
The assessment objective is to ensure compliance with the grant
requirement for an annual audit. Review the audit clause in the grant
agreement and determine when/if audit is indicated.
Determine whether the Grantee is making arrangements for this audit.
Who are the auditor's? Are the auditor's on RIG/AiN's list of approved
auditors for the recipient-contracted programs. Inform the Grantee of
the procedures involved in the conduct of such audits; the review
issuance of the audit reports; and the follow-up of audit
recommendations .
V .Program Results
The assessment objective is to have a general idea of whether the
Grantee is making progress in achieving the outputs contained in the
grant agreement.
The grant agreement contains a detailed list of outputs that the
Grantee is expected to achieve by the end of the grant period and
which are expected to be in certain stages of completion during the life
of the grant. Document the grant date, the PACD and disbursements
to date. Through discussions with Grantee officials and a review of
relevant documentation, determine whether, in relation to the level of
disbursements and implementation period, the Grantee has made
reasonable progress in achieving program results.
Appendix 6-6
Who is responsible for financial reporting at CRS; Lea Toto
Describe the process for writing financial reports among Lea Toto
staff to CRS;
Describe the process for reviewing Lea Toto financial reports by CRS
staff;
Describe the process for writing financial reports among CRS staff to
USAID;
Describe the process for reviewing CRS financial reports by USAID
staff.
What is the agreed upon financial process of reporting
* Get copies of document(s) describing this process
Are there verbal agreements for reporting that are different
than those documented
If so, describe opinions of those involved
Describe compliance to the financial reporting process described
above
* Get copies of all reports
Describe opinions of those involved
Analyze contents of written reports for:
Compliance with process described in documents
Compliance with process agreed upon verbally
Clarity
Transparency
What is working
What is not working
Recommendations
Management/Supervision
What is the current relationship between Nyumbani & Lea Toto?
What are the relationships between Nyumbani & Lea Toto with regard
to:
Program decisions;
Financial decisions;
Supervision of staff and activities;
Provision of support and facilitation to Lea Toto in
implementation;
How clear are these relationships
Appendix 6-7
Describe communication process between Nyumbani & Leatoto and
CRS and USAID
Is the relationship between Nyumbani & Lea Toto facilitative of the
Lea Toto work?
What is the future vision for this work?
What is working
What is not working
Recommendations
Technical support
Answer with respect to:
USAID providing TA to CRS;
CRS to Lea Toto
Nyumbani to Leatoto
Lea toto to Community
What technical support is needed
How is the need determined
Who determines the need
How is it being met:
What type of technical support is provided
How often?
Constraints
What works (get documentation describing technical support
provided)
What does not work
Recommendations
Monitoring and Evaluation
Describe written monitoring and evaluation plan
* Get M&E plan
How was the M&E plan developed?
Is there an effective MIS in place?
If not, how do you track activities?
Who collects the data?
How often?
Who reviews it?
Who aggregates it and puts it into a document?
Who uses the data?
Confirm the monitoring plan given to the evaluation team
Appendix 6-8
Measuring impact
Is it being measured?
How? With what accuracy? validity?
What are other possible ways of measuring impact in the future?
When was the baseline data collected?
When were the results received?
To what extent were key partners (CRS, Lea Toto, and the community)
involved in developing the instrument?
How have the baseline results been used?
How do you plan to move from baseline to M & E?
IN Conclusion ...
Is this a worthwhile program?
What are the unexpected outcomes
-Good outcomes
-bad outcomes (Have they been addressed. If so, how?) Should the program
be sustained?
If so, what would it need to be sustained?
How to sustain it?
Lea Toto model
What are the barriers to HIV+ children accessing Leatoto?
What is the role of stigma?
What feeds into or decreases stigma?
What is the advantage to HIV+ children of targeting them in
Particular?
Questionnaire to the Focus Group
Introduce the purpose of the focus group
Thank participants for participating
Background information
What has been your work as a CHW in the community?
(Le. do you work with another organization? Doing what? )
Do you know people living with HIV/AIDS?
Do you know children living with HIV/AIDS?
(explain)?
In your work with other organizations, have you found people living
with HIV/AIDS in the community?
If so, what has been your involvement with them?
Appendix 6-9
How did you learn about Lea Toto?
What is your current connection with Lea Toto?
How do you work with them?
How do they work with you?
Do you get benefits from Lea Toto?
If so, what are they?
For CHWS already working with Lea Toto:
Since you have begun to work with Lea Toto, how has your work in
the community changed?
To focus group leaders..... you will probably not
reach the end of this package ofquestions
10 minutes before the end of the focus
group... come back to this page to finish....
Finishing Up the focus group:
How do you think the well being of HIV+ children and their families
has changed as a result of Lea Toto?
Give 10 minutes to the group to express other ideas, concerns,
observations, etc.
IdentifYing the Needs and Resources available to:
Children in general in Kangemi
Children affected bv HIVIAIDS
Children who are HIV+:
What is the magnitude of orphans in Kangemi, in general?
A lot? A little? Explain
What is the magnitude of children affected by HIV/AIDS?
What is the magnitude of HIV+ orphans?
What are the needs of the children in general in Kangemi?
Do those differ for children affected by HIV/AIDS?
Ifso, how?
What are the specific needs of HIV+ children?
How are these needs addressed by the community?
Extended family? Neighbors? Siblings? No support? Etc?
Appendix 6-10
What programs/services, other than Lea Toto, are available for
vulnerable children in Kangemi?
Which of these might also be available to HIV+ children?
Other than Lea Toto, what help can HIV+ children get in Kangemi?
Do you think that other types of children would benefit from the Lea
Toto activities? If so, who would most benefit and how?
-
How to increase reach of Lea Toto
What are the methods that Lea Toto can use to reach more groups
with information?
How do you think Lea Toto could reach more children?
Are you a member of an informal or an organized group of people?
If yes, how might Lea Toto link up with that group?
Community involvement
Do you feel that Lea Toto is responding to a community felt need or
not?
What is the attitude about HIV+ children in the community?
What is the capacity of the community to care for HIV+ children?
What is the role of the community in Lea Toto activities?
What could Lea Toto do to help make it easier for community
members to volunteer to work with Lea Toto program?
Community Mobilization:
What community structures could facilitate community mobilization
around the issue of HIV affected and/or infected children?
Who are the key persons who could help in that process?
How do you think Lea toto could work with the community to increase
the community's ability to care for HIV+ children?
To increase HIV prevention?
If Lea Toto had another location closer to where caregivers are living,
that was also open to the community during weekends or evenings, .
Would this be an advantage? If so, how
Or a disadvantqge? If so, why? ...
Appendix 6-11
Acceptance of CHWs by Lea Toto been
In the Lea Toto program, CHWs are not well accepted by hOlJseholds
with HIV+ children;
Why do you think this happens?
What can be done to increase acceptance of CHWs by families
of HIV+ children?
Stigma:
What is your perception and experience with people who are HIV+
How does the community treat people living with HIV/AIDS?
What about children who are HIV+?
Why do you think some people in the community react negatively
to people living with HIV/AIDS? (Facilitator, try to get out where the
negative perceptions are coming from?)
Do you think HIV+ children should get free health care?
Why, or why not?
Is there a need for a specific health center for HIV+ children?
Why or why not?
What are the biggest barriers to providing care of the HIV+ child and
the child's family?
i.e. economic? No money?
The attitude that the children will die early anyway?
Insufficient information and knowledge about how to care
for them?
Fear that other people will find out that the child is HIV+?
Economic situation and potential for change in Kangemi
What are the economic activities in Kangemi?
What do you do for income?
Are there strategies that can support people to increase the economic
situation of families with HIV+ children?
How are families who have an family member with HIV currently?
Economically and otherwise?
Appendix 6-12
Attitudes toward Lea Toto:
How do you feel about the home visits conducted by Lea Toto?
Do you have suggestions about how Lea Toto may be more
effective?
Do you have concerns?
What has been the reaction of other CHWs to your involvement with
Lea Toto?
Finishing up the focus group:
How do you think the well being of HIV+ children and their families
has changed as a result of Lea Toto?
Give 10 minutes to the group to express other ideas, concerns,
observations, etc.
Questionnaire to the Focus Group Care
Introduce the purpose of the focus group
Thank participants for participating
Background information:
How did you learn about Lea Toto?
What is your current connection with Lea Toto?
How do you work with them?
How do they work with you?
What kinds of benefits do you get from Lea Toto?
To focus group leaders .... you will probably not
reach the end of this package of questions..
10 minutes before the end of the focus
group come back to this page to finish....
Finishing UD the focus Group:
How do you think the well being of HIV+ children and their families
has changed as a result of Lea Toto?
Give 10 minutes to the group to express other ideas, concerns,
observations, etc.
Appendix 6-13
Identifying the Needs and Resources available to:
Children in General in Kangemi
Children affected bv HIVIAIDS
Children who are HIV+:
What is the magnitude of orphans in Kangemi, in general?
A lot? A little? Explain
What is the magnitude of children affected by HIV/AIDS?
What is the magnitude of HIV+ orphans?
What are the needs of the children in general in Kangemi?
Do those differ for children affected by HIV/AIDS?
If so, how? What are the specific needs of HIV+ children?
How are these needs addressed by the community?
extended family? Neighbors? Siblings? No support? Etc?
What programs/services, other than Lea Toto, are available for
vulnerable children in Kangemi?
Which of these might also be available to HIV+ children?
Other than Lea Toto, what help can HIV+ children get in Kangemi?
Do you think that other types of children would benefit from the Lea
Toto activities? If so, who would most benefit and how?
How to increase reach of Lea Toto
What are the methods that Lea Toto can use to reach more groups
with information?
How do you think Lea Toto could reach more children?
Are you a member of an informal or an organized group of people?
If yes, how might Lea Toto link up with that group?
Community involvement
Do you feel that Lea Toto is responding to a community felt need or
not?
What is the attitude about HIV+ children in the community?
What is the capacity of the community to care for HIV+ children?
What is the role of the community in Lea Toto activities?
What could Lea Toto do to help make it easier for community
members to volunteer to work with Lea Toto program?
Appendix 6-14
Community Mobilization:
What community structures could facilitate community mobilization
around the issue of HIV affected and/or infected children?
Who are the key persons who could help in that process?
How do you think Lea Toto could work with the community to increase
the community's ability to care for HIV+ children?
To increase HIV prevention?
If Lea Toto had another location that was closer to where caregivers
are living, that was also open to the community during weekends or
evenings,
Would this be an advantage? If so, how
or a disadvantage? If so, why?
Acceptance of CHWs bv Lea Toto beneficiaries:
In the Lea Toto program, CHWs are not well accepted by households
with HIV+ children;
Why do you think this happens?
What can be done to increase acceptance of CHWs by families
of HIV+ children?
Stigma
Facilitators, this question is only for the HIV negative group:
What is your perception of people who are HIV+
Continue in all groups with the following questions:
How does the community treat people living with HIV/AIDS?
What about children who are HIV+?
Why do you think some people in the community react negatively to
people living with HIV/AIDS? (Facilitator, try to get out where
the negative perceptions are coming from?)
Do you think HIV+ children should get free health care?
Why, or why not?
Is there a need for a specific health center for HIV+ children?
Why or why not?
What are the biggest barriers to providing care of the HIV+ child and
the child's family?
i.e. economic? No money?
The attitude that the children will die early anyway?
Insufficient information and knowledge about how to care
for them?
Fear that other people will find out that the child is HIV+?
Appendix 6-15
Economic situation and Potential for change in Kangemi
What are the economic activities in Kangemi?
What do you do for income?
Are there strategies that can support people to increase the economic
situation of families with HIV+ children?
How are families who have a family member with HIV currently
coping?
Economically and otherwise?
Attitudes toward Lea Toto:
How do you feel about the home visits conducted by Lea Toto?
Do you have suggestions about how Lea Toto may be more
effective?
Do you have concerns?
What has been the reaction of your neighbors?
Would you be willing to have a volunteer from the community come to
your home to visit and help you?
If yes, what would be most helpful for a volunteer to do?
If not, why not?
Finishing up the focus group.
How do you think the well being of HIV+ children and their families has changed
as a result of Lea Toto?
Give 10 minutes to the group to express other ideas, concerns,
observations, etc.
Questionnaire to the Community (5/2/01 )
What are the needs of the children in general in Kangemi?
What services, other than Lea Toto, are available for vulnerable
children in Kangemi?
What is the magnitude of HIV among children in Kangemi?
What are critical needs of HIV+ children?
What services are available to other children that are also
available to HIV+ children?
Are you aware of Lea Toto and its programs?
How did you learn about Lea Toto?
What needs are being addressed through Lea Toto activities and
how?
Do you know any children who benefited from Lea Toto?
Appendix 6-16
What kind of benefits?
Do you know of how many children have been reached by Lea
Toto with: medical, clinical, nutritional care, referrals for further
management? Many? A few?
How do you think the well-being of HIV+ children and their
families has changed as a result of Lea Toto?
Are there other types of children who would benefit from the Lea
Toto activities?
What is the magnitude of the problem of orphans in Kangemi, in
general?
What is the magnitude of the problem of children affected by
HIV/AID5?
What is the magnitude of the problem of HIV+ orphans?
What are the unmet needs of HIV+ children in Kangemi?
Do you feel Lea Toto is responding to a community felt need or
not?
Are members of Kangemi likely to volunteer in Lea Toto
activities to support HIV+ children?
If not, why not?
What can Lea Toto do to help make it easier for people to
volunteer?
How do you think Lea Toto could reach more children?
Are you a member of an organized group?
If yes, how might Lea Toto link up that group?
What are the methods that Lea Toto can reach more groups with
information?
What is the attitude about HIV+ children in the community?
What is the role of the community in Lea Toto activities?
What is the capacity of the community to care for HIV+ children?
What community structures could facilitate community
mobilization? around the issue of HIV affected and/or infected
children?
Who are the key persons who could help in that process?
How do you think Lea Toto would work with the community to
increase the community's ability to care for HIV+ children?
To increase HIV prevention?
In the Lea Toto program, .CHWs are not well accepted by
households with HIV+ children; i.e. Why do you think that is true?
What can be done to increase acceptance of CHWs by families of HIV+ children?
How is Kangemi community organized?
What are the economic activities in Kangemi?
Appendix 6-17
Are there strategies that can support people to increase
economic stability? If so, give examples
How are the families infected with HIV+ coping? Economically
and otherwise?
STIGMA:
What is your perception of people who are HIV+? (PLWHA)
Do you know PLWHA ?
Do you know children living with HIV/AIDS?
How does the community treat people living with HIV/AIDS?
How about HIV+ children?
Why do think some people in the community react negatively to
PLWHA?
Why do think people treat them differently if they are HIV+?
Do you think HIV+ children should get free health care? Why and Why not?
What are the biggest barriers to providing care for the HIV+ child and the child's
family?
Economic? No money?
The attitude that the children will die anyway?
Insufficient information and knowledge about how to care
for them?
Fear that other people will find out that the child has HIV?
There will be four ( 4) discussion groups that will discuss some of
the programmatic challenges around Children Affected by AIDS.
Kindly enlist in of the groups that covers a topic in which you are particularly
interested or could make a significant contribution towards.
A maximum of seven (7) participants per topic will be allowed.
The topics of discussion are:
Potential contribution of an activity that focuses on care and
support to HIV + children to the well-being of children affected by
HIVI AIDS in Kenya
How to encourage disclosure and acceptance by the community
Targeting HIV+ children versus Orphans and Other Vulnerable
Children (OVC)
Challenges and strategies in mobilizing communities and developing community
ownership in an urban setting.
Appendix 6-18
Topics
Challenges and strategies in mobilizing communities and developing
community ownership in an urban setting. (Victor)
What are the strategies that participant organizations have applied
Which worked? Which did not work?
In a community with a transient, unrelated population, how do you
Immobilize them for a common cause.
What technical inputs are required to conduct this process
What were the main problems that they encountered?
And how they overcame them?
In a slum area where poverty is pervasive, how much community ownership and
involvement can be realistically expected?
For the organization mobilizing the community, what role should they play in
facilitating the process? Financial resources? Technical resources?
Targeting HIV+ children vs Orphans and Vulnerable Children (OVC)
Based on your experience and giving examples from your own activities:
What would be the advantages of L T continuing a focus on only HIV+ children
and their families?
What would be the disadvantage
What would be the advantages of L T focusing on OVC, of which HIV+ children
would be included?
If L T would focus on OVC, then how would they prioritize and select target
population?
How do you address the needs of their families?
How to encourage disclosure and acceptance by the community
One of the major challenges to the L T and other programs targeting PLWHAs is
that once they have been diagnosed as such there is fear.
Appendix 6-19
What strategies have you used or observed within the community that increase
acceptance of PLWHA?
What strategies have you used in your programs that have encouraged
disclosure of sero-status ? at family level? (women's disclosure to partner) At
community level?
Is there evidence in your programs that provision of support such as medicine,
food, etc. increase willingness to disclose? And ultimately reduces stigma?
How to effectively handle the psycho-social needs of the HIV+ child, including the
when and how to disclose their sero-status to them.
LT, working in a relatively low prevalence area, find people reluctant to associate
with an HIV/AIOS program for fear of stigma and they are also reluctant to allow
community volunteers into their homes because of concern about revealing their
sero-status and being ostracized. What strategies are being used to overcome
these barriers?
Potential contribution of an activity that focuses on care and support to
HIV+ children
What is your organization doing now to address the specific needs of HIV+
children?
Would it be appropriate for L T to use its comparative advantage to support other
organizations working with vulnerable children to increase their capacity to
meet the needs of HIV+ children in their programs?
What are the strategies that L T could use to build the capacity of the community
to support HIV/AIOS+ children?
How far should L T go in providing support to the rest of the family?
Le. care of parents, siblings
And for how long after the child dies?
Realistically, how much community ownership can be expected from a program
that focuses on HIV+ children?
How does a program such as L T contribute to the support of children affected by
AIOS in Kenya?
Appendix 6-20
7. Appendix 7: Principles for Programming (Draft 2- October)
DISCUSSION PAPER
Principles to Guide Programming for Orphans and other Vulnerable
Children
This document aims to accelerate a process to build consensus on guiding
principles for an expanded response to children and adolescents affected by
HIV/AIDS. This effort is grounded in and driven by the firm conviction that
children living in AIDS-affected communities have the right to protection,
appropriate care and support. They have the right to protect themselves from
becoming infected with HIV, and must not be forced into situations where they
face risks of infection with HIV or other sexually transmitted diseases. Children
have the right to grow up without taking sole responsibility for households, and
they have the right to information, education and health care.
The global community has a moral responsibility to protect, respect, and fulfil
these rights for all children and adolescents affected by HIV/AIDS. As articulated
in the Convention on the Rights of the Child (CRC), nations are responsible for
ensuring that children are not simply objects of decision-making, but rather active
sUbjects with a meaningful role in decisions affecting them. The rights of children
infected with HIV, and all other children who are made vulnerable by AIDS
should be carefully considered when determining their needs in the context of
HIV/AIDS.
The needs of children and adolescents affected by HIV/AIDS are vast and
growing. Societies are confronted with a generation of children growin'g up
without adequate adult role models and without adult support and protection.
Children and adolescents who are malnourished, undereducated and
marginalized represent a grave threat to security, stability and markets in heavily
AIDS-affected countries. While the challenge of ensuring their safety, well being
and development is daunting, the risks of a generation without family support,
education, and opportunities are too great to be ignored.
All evidence indicates that this crisis is growing worse at an alarming rate. Even if
HIV rates are signi'ficantly stabilised in the near future - an unlikely prospect in
most areas - the number of orphans will continue to increase and remain very
high for decades.
The global community needs clear principles to guide collaborative action for
orphans and other children and adolescents affected by HIV/AIDS. This
document is being developed through a participatory process intended to expand
and enhance the global response by identifying such principles and building
consensus around them into a broad vision of what can and should be done. It
aims to expand and strengthen the circle of partners who will take up the
Appendix 7-1
responsibilities to make this vIsion a reality. The current draft reflects the
experience of many organisations and experienced individuals, but it is being
distributed with the intention of soliciting even greater participation in its
development.
The principles that result from this process are intended to serve as a resource to
guide sound, effective action at local, district, national and global levels in the
development and implementation of initiatives to address the needs of vulnerable
children and adolescents in AIDS affected areas.
HIV/AIDS, orphans and other vulnerable children and adolescents
The HIV/AIDS epidemic has rapidly evolved from a health crisis into a
development crisis with profound social and economic ramifications.
• HIV/AIDS primarily affects young adults in the prime of life. Around half of
all people who acquire HIV become infected before they turn 25, and
typically die before their 35th birthday.
• The orphans left behind when these adults die are becoming a generation
of marginalized young people, forced to care for sick adults, siblings and
even entire households on their own, with little experience of living in
stable family environments.
Statistics
The loss of able adults critically impacts economies through lost
productivity, labour, expertise, and increased health care and death￾related costs. In the most severely affected countries, AIDS is reversing
decades of investments in health,
education and human resource
development. 18.8 million people around the world have
already died of AIDS, 3.8 million of them children.
34.3 million are currently HIV infected.
The most recent UNAIDSIWHO estimates show
that in 1999 alone, 5.3 million were newly
infected with HIV.
The number of children under the age of 15 who
have already lost their mother or both parents to
AIDS is estimated to be 13.2 million by the end of
1999.
Estimates project that the number of children
under the age of 15 who will have lost one or
both parents from all causes, including AIDS, in a
sample of 34 severely affected countries, will be
40.3 million by the year 2005 and 44.2 million by
2010.
•
•
•
•
•
• Children orphaned by AIDS and
children and adolescents made
vulnerable by HIV/AIDS, constitute
a significant portion of the global
AIDS emergency. UNAIDS
estimates that by the end of 1999,
13.2 million children had lost their
mother or both parents to AIDS3
•
However, these children are only a
portion of those who are seriously
affected by HIV/AIDS. There are
millions of children whose parents
are ill; many of these children have become primary care providers for their
parents, neighbours and relatives. There are millions more children and
adolescents whose fathers have died because of AIDS. There are those living in
3 Report on the global HIV/AIDS epidemic, June 2000, Geneva: UNAIDS
Appendix 7-2
households where the financial and emotional capacity is over-stretched as a
result of caring for an increased number of children and other dependants; those
who live in communities heavily affected by the AIDS epidemic; those who are
themselves living with HIV/AIDS; and those whose day-to-day lives put them at
high risk of HIV infection.
While more than 90% of children orphaned by AIDS to date are in sub-Saharan
Africa, the number of orphans is increasing and will continue to increase in other
regions. Though prevalence has remained low in many countries in Eastern
Europe and Central Asia, incidence is rapidly escalating. The same is true for
the Caribbean and Central America. In comparison with the rates of HIV
infection in sub-Saharan Africa, those in the general population of Asia are low;
the prevalence among 15-49-year-olds exceeds 1% in only three countries -
Cambodia, Myanmar and Thailand.
But prevalence rates alone do not tell the whole story in Asia. China and India
jointly account for more than a third of the world's population. In these countries,
even low prevalence rates result in large numbers of HIV infected people. In
India, for example, there were 3.7 million people living with HIV/AIDS at the
beginning of the millennium - more than in any other country in the world except
South Africa.
The development ofguiding principles
The impact of AIDS on children and adolescents and on their families is so vast
that only a broadly inclusive, collaborative effort can effectively mitigate it. We all
must strengthen and reinforce our resolve to put aside individual and
organizational agendas and piece together a network of responses that will
match the scale of the impact. Communities that have developed effective
responses, based on sound principles, need to be recognized in order for
national, regional and global learning from this experience to be expanded and
accelerated.
More than fifteen years of action against HIV/AIDS has demonstrated that
decreasing incidence and mitigating the epidemic's impacts, including on children
and adolescents, must be nationally driven, as much as possible, from the
highest levels of government. Programmes focussing on children and
adolescents need to be in place in more than one government ministry.
Prevention and mitigation efforts must involve all sectors of government; civil
society, including religious organizations, non-governmental organizations,
community groups and associations of people living with or affected by
HIV/AIDS; the private sector; international organizations; donor governments;
and individual citizens. The front line of response to HIV/AIDS is the affected
individuals, families and communities. Mechanisms must be developed to
channel resource directly to those who need them and can use them effectively
at the community level. There is an urgent need to provide stronger and broader
political, financial and technical assistance at all levels.
Appendix 7-3
Much has already been learned from current responses to the impacts of the
HIVIAIDS epidemic on children and adolescents. However, efforts have
remained fragmented and of small scale relative to the magnitude of the
problems caused by the epidemic. The challenge to consolidate these
experiences and lessons learned from around the world and to develop
mechanisms for scaling up responses is great. The development of common
principles to guide collaborative action is intended to generate wider and stronger
partnerships and commitments to an expanded response to orphans, and other
children and adolescents affected by HIVIAIDS. Their needs demand that we do
so. Their rights are a framework that indicates what must be achieved.
The price to be paid if we do not respond adequately to this challenge will be
paid not only by the most vulnerable children and families, it is a price we and
succeeding generations will pay in underdevelopment, social instability, and lost
potential. This is a test of our humanity and our intelligence. We cannot afford to
fail.
The following four sections discuss:
1. Human rights as a framework for analyzing the impact of HIV/AIDS on
children and the
response to the epidemic;
2. A strategic approach to action
3. Proposed principles and approaches to guide programming for strategic
action, and;
4. The importance of collaboration and networking.
This document is offered as a stal1ing point for discussions among stakeholders
at the local, district, national and international levels. The principles and
recommendations herein will remain open for revision, in order to reflect the
ongoing dialogue and incorporate lessons learned from experience.
Human rights as a framework for analyzing the impact of HIVIAIDS on
children and the response to the epidemic
Human rights-based approaches have increasingly been recognized as essential
to the success of HIV prevention and care programs, including those working
with children and adolescents. Governments have committed themselves to
respecting, protecting and fulfilling human rights by ratifying human rights
treaties, such as the Convention on the Rights of the Child. In addition many
NGOs utilize human rights as a programming framework. The interrelationships
between the protection, respect, and fulfillment of rights and situations posed by
the HIV/AIDS pandemic provide both dangers and opportunities for children and
adolescents. At the Committee on the Rights of the Child Theme Day 1998:
Appendix 7-4
Children Living in a World with HIV/AIDS Peter Piot, Executive Director of
UNAIDS, said:
What is needed now is to expand the relationship between current
children's rights initiatives and HIVIAIDS prevention and care efforts.
Promoting the Convention on the Rights of the Child, as well as other
human rights treaties, is one step in that direction.
At the same event, Mary Robinson, UN High Commissioner for Human Rights,
noted:
Infants, young children and adolescents are all confronted with a serious
challenge to their human rights contained in the Convention on the Rights of the
Child as a result of the [HIVIAIDSJ pandemic; at the same time, the Convention
provides an essential and powerful framework for preventing and combating the
spread of AIDS among children and adolescents and avoiding their being
adversely affected by the disease and its consequences. Human rights
approaches to programming are not only a matter of doing the right thing (Le. a
good, positive outcome for children and adolescents), but of doing it the right way
(Le. a concern for process, participation, ownership, and sustainability).
Fundamental Principles from the Convention on the Rights of the Child
The Convention on the Rights of the Child includes four general principles, which
underpin its provisions and offer guidance for their implementation. These
principles are:
• Non-discrimination;
• The best interests of the child;
• Survival and development; and
• Opinion and participation.
These four guiding principles highlight the nature of the relationship between
children and human rights, in that children are rights holders and active
participants in their own lives, while at the same time in need of special
protection because they are vulnerable.
Appendix 7-5
Guidance Provided by the Convention on the Rights of the Child
The United Nations Convention on the Rights of the Child, which has been ratified by
more countries than any other international instrument, specifies standards to that
should be given particular attention when addressing the situation of children affected
by HIV/AIDS:
Article 3 includes the provision that the "best interests of the child" shall be a
primary consideration in matters concerning children;
Article 5 recognizes the responsibility of members of the extended family,
community, or legal guardians to provide for the child in a n1anner consistent with his
or her evolving capacities;
Article 8 concerns the right of a child to preserve his or her identity, including
name and family relations;
Article 12 recognizes a child's right to be heard in any proceedings that concern
him or her;
Article 18 recognizes the responsibility of the State to support parents and legal
guardians in their child-rearing responsibilities and to develop services for the care of
children;
Article 19 concerns the protection of children from abuse, neglect, maltreatment,
or exploitation;
Article 20 concerns the responsibility of the State to provide special protection
for a child deprived of his or her family environment;
Article 21 addresses safeguards regarding adoption;
Article 24 recognizes the right of children to the highest standard of health and
access to health services;
Article 25 concerns the periodic review of the situation of a child who has been
placed in care;
Article 27 recognizes the right of children to an adequate standard of living;
Article 28 concerns the right of every child to education;
Article 32 addresses the protection of children from economic exploitation; and
Article 34 concerns the protection of children from sexual exploitation and
abuse.
Appendix 7-6
A Strategic Approach
Developing effective interventions to mitigate the devastation HIV/AIDS causes
among children and families requires giving careful attention both to the
problems on a human scale, what happens to parents, children, and orphans'
guardians, and to the massive scale and decades long future impacts of the
HIV/AIDS. Establishing programs that significantly improve the lives of individual
children and families affected by HIV/AIDS is challenging, even with enough
resources, organizational capacity, and compassion. Vulnerable individuals and
households can be identified, health services can be provided, school expenses
of orphans can be paid, food can be distributed, and supportive counseling can
be provided. Such interventions meet real needs, but the overwhelming majority
of agencies and donors that have responded so far have paid too little attention
to the massive scale of the problems that continue to increase with no end in
sight. Since programs to date have reached only a small fraction of the most
vulnerable children in the countries hardest hit by AIDS, the fundamental
challenge is to develop interventions that make a difference over the long haul in
the lives of the children and families affected by HIV/AIDS at a scale that
matches the magnitude of their needs.
The starting point for effective responses to the impacts of the pandemic on
children is recognizing that families and communities are the first line of response
to HIV/AIDS. Whether outside bodies intervene or not, families and communities
are going to be dealing with the impacts of HIV/AIDS, often with great difficulty.
Consequently, interventions by governments, international organizations, NGOs,
religious bodies, and others will have significant, sustainable impacts on
children's vulnerability and well being to the extent that they strengthen the
ongoing capacities of affected families and communities to protect and care for
vulnerable children. Building family and community capacities is not enough, but
it must be the foundation for addressing the impacts of HIV/AIDS on children.
Children on the Brink 2000 has presented a strategic framework to help shape an
effective, collaborative response to the impacts of HIV/AIDS on children and
families:
1. Strengthen the capacity offamilies to cope with their problems.
2. Mobilize and strengthen community-based responses.
3. Strengthen the capacity of children and young people to meet their own
needs.
4. Ensure that governments protect the most vulnerable children and provide
essential
services.
5. Create an enabling environment for affected children and families.
Appendix 7-7
Proposed principles and approaches to guide programming
1. Strengthen the caring and coping capacities of families and communities
In nearly all areas heavily affected by HIV/AIDS, the 'first line of response to
protect the rights and address the needs of children is extended families.
Families show remarkable creativity and dedication in coping with the impacts of
HIV/AIDS. However, the scale of the pandemic is causing enormous strain on
the traditional coping mechanisms of the extended family, eroding its capacity to
care for those suffering from or left behind by HIV/AIDS. In many areas,
communities have organized, formally or informally, to support especially
vulnerable children and households. Families and communities are the primary
social safety nets, and, to the extent possible, their capacities must be
strengthened to minimize the number of children and adolescents who slip
through them onto the street. Supplemental assistance and support services are
needed, but they will be overwhelmed if families and communities are allowed to
collapse. Programmes should affirm and reinforce family and community
responses to the crisis. Efficient systems need to be developed and strengthened
to monitor the status of vulnerable children in the community, and to identify and
mitigate exploitation and abuse.
2. Increase and strengthen community care rather than institutional care
In many areas of the world, orphaned children have traditionally been cared for
by members of their extended family. In some areas, religious communities and
foster families also provide care. In AIDS-affected areas there are increasing
stresses to the capacity of extended families and communities to provide care,
yet in most cases institutions are not an appropriate alternative. Institutions,
such as orphanages, generally do not adequately meet key developmental needs
of children, such as consistency of care, especially for younger children. In
addition, when children grow up without family and community connections, they
are cut off from the support networks they will need as adults, as well as the
opportunities to learn the skills and culture that children learn in families and in .
their communities.
Economically, institutional care is also not 'financially feasible for large numbers
of children. The 'financial resources needed to support institutional care for a
single child could assist scores and even hundreds of children if used effectively
to support a community-based initiative. In communities under economic stress,
increasing the number of places available in institutions has often led to more
children being pushed from family care to fill those places, where the material
standards are seen as being higher than families can provide. This increases the
scale of the problem and consumes resources that could do more if directed
towards strengthening family and community capacities to care for vulnerable
children. Institutional care can be helpful in some cases where there is no other
option, as an interim solution while a fostering situation is arranged. Children in
such situations should be reintegrated into the community as soon as a reliable
caregiver can be identified.
Appendix 7-8
One alternative model for institutions has involved transformation of children's
homes into community-based resource centres that help families support children
in the community. Such centres provide day care for foster parents or parents in
need of relief; support groups; counselling; training in parenting skills; skills
training programmes for older children, and a variety of other forms of support.
There are many other forms of care: economic strengthening of households and
communities, group foster homes, school-based services, etc...
All children in affected households (i.e. with chronically ill caregivers/parents)
should participate in decision-making processes regarding fostering. This is
integral to memory approaches, which try to help HIV-positive parents give their
children the support they need and to prepare for the future. Through this
process inheritance rights are less likely to be violated.
3. Enhance the capacity of families. communities, and local groups to
respond to the psychosocial needs of vulnerable children and adolescents
HIV/AIDS undermines then often destroys the fundamental relationships
considered ideal to healthy family life and child development. Children affected
by HIV/AIDS suffer anxiety and fear during the years of parental illness, then
grief and trauma when a parent dies. Less tangible than the material problems
children suffer, these psychosocial problems are rarely addressed in
programmes, although they are frequently of concern to staff and can have
serious long-term impacts on children and adolescents. A child's progression
through basic developmental stages is jeopardised if HIV-related illness reduces
and then ends a parent's capacity to provide consistent love and care.
Development is also jeopardised if HIV/AIDS causes social isolation, stigma, and
discrimination or otherwise disrupts the experiences normal within a child's
community. If developmental needs are not fulfilled, a child may have difficulty
relating to a care provider or other people and may demonstrate behavioural or
psychological problems.
Children's psychosocial problems are often compounded by silence. In many
cultures it is taboo to discuss an impending death for fear of making it happen.
Also, fear of being stigmatized leads some families to deny that an illness is
related to HIV/AIDS or to forbid discussion of it. In this climate of silence,
children's fears and questions about their own future are neither acknowledged
nor discussed. After the death of a parent, children's grief is compounded if
siblings are separated to live in different households or if new step-parents or
guardians fail to provide nurturing care. Such losses can cause invisible wounds
that may never heal.
Appendix 7-9
Enabling a family to cope more effectively with the material problems they face is
a major step towards helping them deal with psychosocial problems, but it is not
enough. Effective measures to address psychosocial needs do not require
separate programmes. They should be incorporated into other activities to
benefit children and families affected by HIV/AIDS. They should involve
community-owned efforts to promote the psychosocial well-being and social
integration of vulnerable children and adolescents in general, as well as efforts to
reach out to and provide emotional support to individuals who are isolated,
withdrawn, or showing other signs of distress. A particularly appropriate response
at the household level is for an ill parent and his/her children to develop a
memory book with important family information and plans for the children's future.
4. Reduce stigma and discrimination
From its earliest stages, the HIV/AIDS epidemic has been accompanied by fear,
ignorance, and denial, leading to stigmatization of and discrimination against
people with HIV/AIDS and their families. Because of their status as orphans or
affected by HIV/AIDS, many children and adolescents also experience stigma
and discrimination, often made worse by the increased poverty they experience
as a result of the death of one or both parents. Stigma and discrimination
increase the pain and suffering already experienced by those who are affected
by HIV/AIDS, and often threatens the effectiveness of prevention and mitigation
efforts. Fear of being identi'fied as a person living with AIDS often keeps people
from seeking treatment and care, discussing prevention, changing unsafe
behaviour, and supporting care for people with HIV/AIDS and their families.
Specific efforts to address and reduce stigma and discrimination must be an
integral part of prevention and mitigation activities.
5. Foster linkages between HIV/AIDS prevention activities and efforts to
support vulnerable children and adolescents
Children orphaned or otherwise affected by HIV/AIDS can also be at higher risk
of HIV infection. It is imperative that support to children and adolescents affected
by HIV/AIDS include a prevention component. There is evidence to suggest that
programs that focus on care for vulnerable children and care for people living
with HIV/AIDS can be especially effective in promoting HIV prevention. Providing
care for children and/or adults affected by HIV/AIDS has the potential to stimulate
a more realistic assessment of personal risk among community members and a
better understanding of potential consequences for themselves and their families.
Many caregivers have SUbsequently begun to actively promote prevention
messages as a result of their familiarity with the effects of the disease and
recognition of the urgent need to prevent additional sickness, death and
orphaning. Prevention messages that are conveyed by a family member, friend,
or acquaintance are likely to have a greater impact on the recipient than
messages conveyed by an unknown outsider.
Appendix 7-10
Meeting needs and building family and community capacity can help prevent the
spread of HIV. Hopelessness and sense of powerlessness are two of the biggest
obstacles to effective prevention efforts. Enabling young people to gain more
control over their lives and to develop hope for a worthwhile future increases the
likelihood that they will chose behaviours that will enable them to avoid HIV
infection. Furthermore, gaining such control often enables adolescents to act on
their choices. Programmes to protect the rights and assist children and
adolescents affected by HIV/AIDS should consider either including prevention
activities or linking to prevention-oriented programmes.
6. Foster linkage between home-based care and support to
children/adolescents
HIV/AIDS has an impact on all members of household - infected adults, non￾infected adults, adolescents and children. However, programmes that target
children affected by HIV/AIDS are often undertaken in isolation from those that
provide care to people living with AIDS. Support for home care of people living
with HIV/AIDS is often done with a focus solely on the people who are ill. There
are limited examples of care initiatives that have included· these two
complementary activities. By promoting care for HIV/AIDS-affected adults,
programmes are effectively assisting their children, and vice versa.
Linking the two types of activities also takes advantage of the cost savings that
can be achieved by integrating care for children and adults within a single
approach, rather than using two different approaches, structures, and/or
programmes. In addition, integrated programming more effectively responds to
the reality that the vulnerability of children in HIV/AIDS-affected households
begins long before the death of the child's parent(s) and continues after their
death.
Children whose parents are ill as a result of AIDS experience the psychosocial
distress of seeing a parent approach death, as well as the economic deterioration
of the household that often accompanies chronic illness of the person who is the
primary source of income. Integrating attention for children into the provision of
care for those who are infected by HIV/AIDS facilitates earlier identification of
these children and earlier action to assist them. Therefore, where possible, it is
advisable to link programmes of care and support for people liVing with HIV/AIDS
and those that focus on the needs of children and adolescents who are affected
by the disease, either by integrating them into a single intervention or by linking
these related interventions to maximize co-ordination and complementarily.
Appendix 7-11
7. Target communities where HIV/AIDS makes children vulnerable. not
"AIDS orphans"
Responses to protect, respect, and fulfil the rights of children affected by
HIV/AIDS should not single out "AIDS orphans". Instead, programmes should
direct services and community mobilization efforts towards communities where
HIV/AIDS is significantly increasing the vulnerability of children and adolescents.
Targeting specific categories of children can lead to increased stigmatization and
discrimination and increased harm to those children. In addition, problems start
for children and adolescents long before a parent dies because of AIDS. The
psychosocial distress and economic problems typically begin with awareness of
HIV infection or illness. Within communities that are not adequately meeting their
children's needs, assistance should be directed to the most vulnerable children
and households, regardless of the specific cause of their vulnerability. Generally,
it is the people who live in these communities, rather than an outside agency,
who are in the best position to determine who is at greatest risk and what factors
should be used to assess vulnerability. Many community-based responses to
children affected by HIV/AIDS have developed effective systems to identify and
prioritize the children/adolescents most in need. In those communities in which
such an approach has not yet been developed, the process to develop
representative, participatory systems should be encouraged and supported.
8. Give particular attention to women and girls
Much of the burden of caring for people living with AIDS and of orphans falls to
women. When illness strikes a family or children are orphaned, very often it is
the girls who are forced to drop out of school, care for younger siblings, and take
on adult tasks. The laws of some countries seriously affected by HIV/AIDS do
not allow women to own property or widows to inherit land. Men must assume
greater responsibility in providing care. Laws and policies should be changed to
ensure and protect basic rights of women and girls. Water and sanitation
development and interventions to reduce demands on firewood for cooking are
needed and will benefit women and girls. Efforts to ensure vulnerable children
can remain in school should give particular attention to girls.
9. Involve children and adolescents as "Part of the Solution"
The CRC de'fines the rights of all persons below age 18 or the legal age of
majority. InterVentions to address the needs of children affected by HIV/AIDS
should be developed with attention to the risks and needs of infancy through
adolescence. Interventions should include emotional, economic, educational and
social support, as well as health promotion. Children and adolescents are
important and valuable resources and should be involved in such interventions
mitigating the impact of the disease in their communities. They can be an
essential "part of the solution" - providing support to each other, to younger
children, and to those who are ill as a result of HIV/AIDS, as well as influencing
behaviour change among peers and within the community.
Appendix 7-12
Actively acknowledging and supporting the potential contribution of adolescents
in efforts to improve their own lives and the lives of others - children and adults -
can build self-esteem, efficacy and can encourage them to adopt safer
behaviours, as well as cultivate concrete skills that can contribute to future self￾support. The involvement of young people in providing psychosocial support isa
way of engaging them in care activities. Such involvement increases "caring
solidarity," which may lead towards preventive behaviour changes.
Providing psychosocial care for orphans and affected children is an entry point to
HIV prevention and care and can be seen as an innovative HIV prevention
strategy, at the same time as a much needed service. Adolescents should be
involved and consulted to the extent possible in the design and implementation of
mitigation and prevention efforts. The elderly, often grandparents, should also be
recognised as key figures in all responses.
10. Accelerate learning and information exchange
Response to the impacts of the HIV/AIDS pandemic is still at a developing stage.
Knowledge and practice in the field are constantly evolving. Governments,
donors, NGOs and community groups need better information about the most
effective ways to intervene and how to achieve quality coverage that addresses
the massive scale of needs. Future efforts to use wisely the resources that are
available must incorporate lessons learned from current efforts through
systematic monitoring, evaluation, and research. Commitment is needed to
identify the types of rights-based approaches that are most effective, efficient,
and sustainable; to identify the conditions under which they are most appropriate;
and to share lessons learned with local and with global partners in this effort. In
addition, it is through linkages and networks, cross-site visits and other methods
that support exchange of information that programmes have the opportunity to
learn from each other's successes and failures. Examples abound of model
programmes that have contributed to the development and implementation of
successful activities in other areas.
11. Strengthen partnerships at all levels and build coalitions among key
stakeholders
The impact of HIV/AIDS on children, their families, and their communities is far
too large and complex to be addressed without the co-ordination and
collaboration of stakeholders at local, national, and global levels. Resources that
could be used to respond to these impacts, often scarce even in the best of
times, are being severely depleted by the expanding crisis. No single action or
actor can effectively address these impacts on its own. Consequently,
programmes to assist children and families affected by AIDS must seek to
involve government, NGOs, community- based organizations, religious bodies,
donors, business, and others in broad initiatives of community action. By
working together, they can bring enough effort and resources to bear on
problems to make a difference. Good examples of such collaboration may be
observed among the many grassroots groups and impoverished communities
Appendix 7-13
that have come together to use their own resources to support orphans and other
vulnerable children.
12. Develop multisectoral. mutually reinforcing programming strategies
HIV/AIDS interventions have typically fallen into such categories as "prevention,"
support for "home-based care," and "orphans programs." Organisations and
government agencies tend be organised around speci'fic professional
capabilities, but the HIV/AIDS-related problems that children and families are
struggling with do not divide themselves into such boxes. They are complex and
interrelated and cannot be addressed adequately by any single professional
discipline. Families and communities, leaders and organizations need to develop
and maintain holistic, integrated programme approaches and interventions and
develop partnerships among organisations and groups so their collaborative
responses respond to needs effectively. Integration also means cross-sectoral
reponses, between health, education, economic growth, agriculture and other
sectors.
13. Ensure that external support does not undermine community initiative and
motivation
It is vital that interventions with AIDS affected children and communities take into
account the long-term nature of AIDS-related problems. HIV infection today will
have direct impacts on children and adolescents 15 to 30 years from now. The
indirect impacts experienced by children and adolescents, such as increased
aggravated poverty, reduced opportunities, decreased nurturing and support, and
increased morbidity and mortality are much wider than HIV/AIDS-related illness
and will extend for decades into the future. Interventions developed today must
respond to the need for wide-scale, long-term efforts that address both the direct
and indirect impacts of AIDS on children and adolescents.
There is serious concern in some areas that new, donor-driven efforts will take
the place of local efforts and that donor support will not continue over the long￾term. Large amounts of funds or material assistance can change the nature of
the humanitarian motivations that drive local efforts. This becomes a problem if
the external assistance ends, or if local organizations shift programmatic focus
due to donor-driven funding conditions and priorities. While there is need at the
community level for funds for basic supplies such as food, medicine, shelter and
school fees, this support must be paired with efforts, including training and
technical assistance in organizational development and resource mobilization
that will enable pLarticipants to continue to make a difference after shorter-term
funding is no longer available.
Appendix 7-14
When donors or organizations are prepared to provide limited amounts of
support for many years, it is possible to develop effective, ongoing partnerships
with community-owned groups whose commitment is not based on the
availability of outside assistance. Central to the provision of external support
must be the recognition that families, communities and the children themselves
are at the front line of the response, demonstrating enormous capacity to care for
and support vulnerable children and adolescents in AIDS-affected areas. It is
imperative that governments, donors, non-governmental organizations (NGOs)
and religious organizations focus on strengthening and supporting these ongoing
efforts of families and communities. Community ownership of support efforts is
of paramount importance.
14. Scale up and scale out
The most critical challenge currently facing organizations seeking to assist AIDS￾affected children and adolescents is that of developing responses to problems on
the same enormous scale as they are occurring. Millions of children have
already been orphaned by HIV/AIDS; tens of millions more will lose one or both
parents to the pandemic in the first decade of the twenty-first century. Tens of
millions more children will be in circumstances requiring special protection
measures. While it is reasonable to believe that the international community will
make substantially more resources available to assist these children than are
currently allocated, resource levels will still be far lower than required.
Each organisation involved in programming must carefully consider how to use
its limited resources to ensure that quality care and support is provided to the
highest number of AIDS-affected children/adolescents possible. Programmes
should be designed and developed to benefit as many children as they can
(scaling up) and effective approaches should be adopted and adapted by
organizations in other areas (scaling out). All groups concerned with health,
safety, well-being, education and economic development must recognize and
respond to the problems the pandemic is causing among children and families,
. and they must actively seek ways to undertake a set of interventions that make a
lasting positive difference in the lives of those in greatest need.
International NGOs need to resist implementing their own "top down"
programmes and initiatives. They should focus on capacity strengthening of
local NGOs and community-owned organizations so that they can be effective
facilitators of community owned programmes.
Recommendations for strategic action
While no single intervention will make a substantial impact on the full range of
economic and psychosocial problems posed by HIV/AIDS, combinations of
activities can make a difference. Some candidate actions for an effective
response are shared in this section.
Appendix 7-15
1. Family and community levels
1.1 Develop and implement programmes to help HIV-positive parents fulfil
their roles as long and as well as possible.
1.2Enable children, whose parents are ill, to express their fears and concerns
about their parents' illness and their own future. Encourage parents to
talk to their children about the illness and plan together for the future
(succession planning).
1.3Strengthen the capacity of existing community-owned responses. Assist
extended families and communities in providing consistent support to
children and adolescents.
1.4Draw on traditional ceremonies and local cultural practices and knowledge
to address grieving and promote social integration.
1.5Train teachers to recognize and respond supportively to withdrawn or
disruptive behaviour or changes in academic performance that can result
from distress over the illness or death of a parent.
1.6Encourage and support communities to conduct psychosocial support
activities, such as structured recreation, art, cultural and sports activities
that provide life skills to enable orphans and other vulnerable children
and adolescents to integrate socially, build confidence, trust, and self￾esteem.
1.70rganize regular home-visiting for orphans and children whose parents
are ill.
1.8Provide counselling services for children who are not responsive to
community-based interventions.
1.9Systematically mobilize and support community-owned responses to the
needs of children and families affected by HIV/AIDS, with emphasis on
the greater involvement of people living with HIV/AIDS.
1.10 Support community ownership as a key to sustaining effective responses
by ensuring that communities are able to identify their greatest concerns
and respond to these, rather than to an externally defined agenda.
There is a need to facilitate community care processes and plan the
supportive role of NGOs at the onset.
Appendix 7-16
1.11 Target social assistance to families in need, not just those grappling with
AIDS, as a way of ensuring equity and discouraging discrimination
against orphans and others affected by AIDS.
1.12 Ensure that interventions benefit as many vulnerable children and
adolescents as possible, given the limited resources available.
1.13 Identify, implement, and evaluate models for scaling up and scaling out
community approaches.
1.14 Ensure monitoring and evaluation to maximize project quality and
coverage.
1.15 Encourage activities that engage and empower adolescents to ensure
they are part of the solution.
1.16 Encourage co-operative problem-solving and support information
exchange among communities.
1.17 Incorporate HIV prevention and care for children and adolescents
affected by AI DS into related community development programmes
1.18 Encourage information exchange, and actively develop collaboration
among stakeholders to maximize the impact of limited resources.
Facilitated program to program visits, or study tours, are good practice
for information exchange
1.19 Utilise monitoring, evaluation, research, and information exchange to
generate Lessons Learned and Good Practices.
1.20 Increase women's access to credit, income-generating activities and
property, including land. In many cases, such action will require
changing laws and policies regarding inheritance and property
ownership.
1.21 Enable vulnerable children to return to and/or stay in school.
1.22 Enable caregivers and child household heads access to guardianship
funds.
1.23 Increase young people's and caregivers' access to microenterprise and
vocational training and credit.
1.24 Protect the property and inheritance rights of widows and orphans.
Appendix 7-17
2. National level
Advocacy and social mobilization
2.1 Actively combat discrimination. Raise the visibility of AIDS while
combating shame and stigma.
2.2 Raise public awareness of the nature of the crisis and mobilize resources
locally and internationally.
2.3Encourage the full participation of communities in all aspects of the
response to HIV/AIDS. Ensure that people living with HIV/AIDS and
those caring for them are involved at every step - including in planning,
implementation, monitoring and evaluation.
Policy reform
2.4 Undertake analysis and reform of relevant national policies.
Comprehensive strategies are needed to guide national policies
involving children and adolescents affected by HIV/AIDS. These
strategies define the role of government and other stakeholders
supporting the coping capacity of individuals, families, and communities,
and providing essential protection through laws, policies, and action.
2.5Develop priority national policies in support of HIV prevention and
mitigation of the impact of AIDS. Focus on protecting younger children
and girls and on providing young people with effective education on
HIV/AIDS and on related reproductive health issues. Encourage
effective prevention programmes involving peer educators.
2.6Mobilize widespread support for the struggle against AIDS and establish
frameworks linking efforts of government and civil society including
religious organizations, non-governmental organizations, the private
sector and communities.
2.7 Ensure access to education for both girls and boys, especially for girls, by
introducing specific measures such as subsidies, scholarships and the
provision of alternative avenues for high-quality education, such as
community schools.
2.8 Reform the education sector to respond better to the needs of orphans
and their communities. Traditional approaches to education need to be
altered to make schools more participatory and responsive to the
everyday needs of students and more relevant to their lives. It is
essential that schools help students acquire skills that can enable them
Appendix 7-18
to make informed decisions and avoid risks. Teacher training and
support is pivotal to this effort.
2.9 Reform the health sector to emphasize HIV prevention and the expansion
of quality health care services that can address the needs of children
and communities affected by AIDS.
2.10 Introduce and enforce laws that realize the rights of children and women,
emphasizing the best interests of the child. Focus on child protection
issues such as child abuse and rape, children in commercial sex work,
exploitative child labour, juvenile justice, and children and women who
lack secure tenure and are denied property ownership.
2.11 Reform social welfare in countries with higher HIV prevalence to focus on
community mobilization towards enabling local social safety nets rather than
dealing with individual case-work style interventions.
2.12 Identify, analyse, refine, and monitor the implementation of a range of
policies, regulations, and laws that impact children affected by HIV/AIDS.
Key aspects to consider include:
• Enactment and enforcement of laws ensuring women the right to own
property;
• Universal birth registration
• Protection of the inheritance rights of orphans and widows;
• Protection of children against neglect and abuse (physical, sexual,
and emotional);
• Prohibition of exploitative and harmful child labour;
• Availability and accessibility of social welfare support;
• Regulation of institutional facilities caring for children;
• Elimination of barriers to vulnerable children continuing their
education;
• Improved access to quality education and information about sexual
and reproductive health;
• Protection and support for street children.
2.1.3 Prohibit discrimination in health care, schools, employment, or other areas
based on actual or presumed HIV/AIDS serostatus.
2.1.4 Regulate and support the placement and guardianship of children who
lack adequate adult care.
Monitoring and evaluation
2.2 Identify, assess and document successful community-based initiatives
with a view to expanding them into effective national or inter-country
programmes.
2.3 Monitor the impact of HIV and AIDS on children and families at all levels
and use the information gathered to take targeted actions.
Appendix 7-19
2.4 Equip communities to monitor the local impact of the epidemic, facilitate
action and evaluate interventions.
2.5 Establish supported surveillance sites for ongoing orphan reporting to
have quality data from selected sites and use demographic projections for
national figures.
2.6 Facilitate access of minors heading households to funds and other state
social safety nets.
3. Global level
3.1 Build consensus on the urgency to address the impact that AIDS will
continue to have on children, adolescents, families, communities, and
the broader societies in which they live.
3.2 Increase commitment among governments, donors, the private sector
and international organizations to act comprehensively and quickly to
mitigate the impacts of AIDS on children, adolescents, and their families.
3.3 Build consensus on principles and approaches to support the
development and implementation of initiatives that will increase the well￾being of children and adolescents, based on the need for large-scale,
sustainable efforts that recognize the vast numbers and long-term
effects of increased proportions of orphans and vulnerable children and
adolescents in AIDS-affected areas.
3.4 Support the development of networks to facilitate the sharing of technical
and financial resources at global, regional, national and local levels.
3.5 Promote consideration of the needs of children and adolescents affected
by HIV/AIDS, and the impact of their vast numbers, in the development
and implementation of HIV/AIDS prevention and mitigation efforts at
global, regional, national and local levels.
3.6 Ensure that development programmes in all sectors, especially in
countries heavily affected by HIV/AIDS, give attention to the rights and
special needs of orphans and vulnerable children and the long-term
impact of vast numbers of children and adolescents affected by AIDS on
current and future development.
3.7 Reinforce the spirit of true collaboration as all concerned unite to meet
the challenges of the AIDS pandemic. The impact of HIV/AIDS on
children and adolescents and on their families is so vast that only a
broadly inclusive effort can begin to mitigate its impact effectively. We
must strengthen our resolve to put aside individual differences and forge
Appendix 7-20
a common commitment to undertake an unparalleled global response to
a crisis of unprecedented magnitude.
The importance of coordination and networking
There are great many challenges to improve networking and strengthen
collaboration of existing efforts and build on them at local, district, national, and
international/global levels. Diverse priorities and uneven relative capacities for
programme delivery and management vary greatly in different settings.
Programming experience makes it clear that co-ordinating efforts is often not
effective without mechanisms that bring together the key partners on a regular
basis to define and review the programme implementation plans, along with
sharing experiences based on the ground realities, obstacles, and opportunities.
In order to achieve larger-scale programming, good practice programmes need
to be adapted and scaled Lip. Key factors that have the potential to substantially
contribute to such programme expansion include government support; national
level advocacy by leaderships; multi-sectoral partnerships (including government,
United Nations agencies and NGOs); capacity building/staff and partner training;
youth and community participation; and financial stability. The International
. Partnership against AIDS in Africa (IPAA) could serve as an ideal mechanism to
strengthen expanded responses in that region, while other mechanisms need to
be identified elsewhere.
Enhanced collaboration and networking among individuals, community groups,
front-line NGOs, religious organisations, private sector, governments,
associations of people living with HIV/AIDS, and other societal actors working
with and for children, adolescents, and HIV/AIDS can and will make a difference
in promoting the rights of the child as a solid framework for responding to and
mitigating the impact of the HIV/AIDS pandemic4
4 For more information and linkages to a broad range of networks and websites ofinterest visit:
http://www.usaid.goy/pop healthlcaba
Children affected by AIDS network and Archive (USAID and Synergy Project) http://www.unaids.org/
Joint United nations Program on HIV/AIDS
Http://www.unicef.org/ United Nations Children's Fund
Appendix 7-21
8. Appendix 8: Fulfilling commitments- Internationally agreed
upon goals and targets to orient our work
1. The World Summit for Children, 1990
Lead UN agency: UNICEF
(Reference: E/ICEF/2000/13 - Emerging issues for children in the 21 st century:
Preparatory Committee for the Special Session of the General Assembly for
follow-up to the World Summit for Children in 2001, 30 May-2 June 2000, New
York)
• The 2001 UN General Assembly Special Session should re-affirm the goals
set in 1990 but should also recognize that further action is required,
particularly against HIV/AIDS, recognizing that HIV/AIDS is one of the new
and greatest threats to the future of children.
• The AIDS pandemic has had a tragic impact on efforts to fulfil children's rights
and has greatly affected the trajectory of human development in the 1990s.
Preparations for the Special Session should include opportunities to provide
inputs and recommendations for further action based on agreed specific goals
and targets for children and adolescents affected by HIV/AIDS.
2. The International Conference on Population and Development, Cairo
1994 and the review undertaken last year after 5 years - Cairo +5
Lead UN agency: UNFPA
(Ref: A1S-2115/Add.1 - Key actions for the further implementation of the
Programme of Action of the International Conference on Population and
Development, 2 July 1999)
• The review called for intensified action in many areas of reproductive and
sexual health including prevention of HIV/AIDS.
• Establishment of benchmarks on HIV/AIDS prevention - to reduce
vulnerability of HIV/AIDS infection, at least 90% of young men and women,
aged 15-24, should have access by 2005 to preventive methods (such as
female and male condoms, voluntary testing, counselling, and follow-up), and
at least 95% by 2010. HIV infection rates in persons 15-24 years of age
should be reduced by 25% in the most affected countries by 2005 and by
25% globally by 2010.
Appendix 8-1
3. The World Summit on Social Development, Copenhagen, 1995 - Review
of implementation and achievements - 26-30 June 2000, Geneva,
Switzerland
• The AI DS epidemic has been a major obstacle to achieving the goals of the
Copenhagen Summit in 1995. AIDS is clearly an unprecedented and
catastrophic development crisis undermining social development
achievements in basic services, particularly primary health care and
education.
• The sixth of the 10 commitments made in 1995 sought to promote and attain
the goals of universal and equitable access to quality education, the highest
attainable standard of physical and mental health, and access of all to primary
health care - Le. quality basic education and primary health care. To do so, it
is imperative to take measures at the national level to enable all women and
men, including young people, to protect themselves against HIV infection, to
mitigate the adverse social impact of the epidemic and to counteract the
increase in poverty and widened social and economic inequalities which have
resulted from the HIV/AIDS epidemic.
• Under Commitment 7, seeking to accelerate the economic, social and human
resource development for Africa and the least developed countries, 25 African
countries most affected by HIV/AIDS were encouraged to adopt time-bound
targets, such as targets for reducing infection levels among young people by
25% by 2005 in countries severely affected by AIDS, and globally by 2010.
4. Organization of African Unity (OAU) Seminar on Strategies to Support
Orphans and Vulnerable Children Affected by HIVIAIDS - April 2000,
Algiers
The seminar adopted a "Common Position and Plan of Action on Strategies to
Support Orphans and Vulnerable Children Affected by HIV/AIDS.
The 5 thematic recommendation areas included detailed points addressing:
1) Breaking through denial and inaction
2) Strengthening legal and policy protection for affected families
3) Strengthening the capacities of vulnerable children and families
4) Building capacity of government and communities
5) Establishing a broad social alliance to slow the rate of infection and
provide care and protection to affected communities
This draft document should complement the above-mentioned resolutions,
goals, and recommendations pertaining to orphan, other vulnerable children and
adolescents.
Appendix 8-2
9. Appendix 9: Proposed process for developing a consensus on
Principles of collaboration for realising the rights of children and
adolescents affected by AIDS (or other title)
Output
UNICEF/UNAIDS/USAID and other lead international organizations (Le.
Francois-Xavier Bagnoud Center for Health and Human Rights, PLAN
International, Save the Children, World Conference on Religion and Peace,
AFXB, Salvation Army, CARE and others) and regional groups widely circulate
this draft document containing proposed principles, approaches and actions, in
an effort to continue an inclusive, participatory process to build consensus and
commitment to action and to guide collaborative and expanded responses to
orphans and children affected by AIDS. The document produced through this
participatory process will be submitted to a wide range of partners for their
endorsement. It will serve as a resource document for setting and fulfilling global
political commitments and translating these into collaborative action at
international, national, district and community levels.
Timetable
July Durban Conference: a list of workshops and sessions on orphans
and children, adolescents and young people affected by AIDS was
compiled. A discussion paper was presented for feedback and
consensus on further action needed and concrete next steps.
August-October Feedback requested regarding recommendations for agreed
upon principles and approaches. Draft 2 produced for wide
consultation/review.
November Review and input at UNICEF-Zambia/USAID regional workshop on
orphans and vulnerable children
December Draft document will be presented at the African Development
Forum for review by African Governments in the framework of the
International Partnership Against AIDS in Africa (IPAA)
February 2001 A consultation will be held to finalise the document.
March￾April 2001 Final edit, printed and distributed as UNAIDS document with all
contributing organizations listed.
U:\Usaid\docs\. .... LT evaluation-Appendices- VMedit
Appendix 9-1