Working Proposal of Assessment Services, Cotlands Community Outreach Program

Assesments will strive to be comprehensive, redundant, and multimodal. Developmental assessments should include cognitve, motor, and social-emotional levels, including parent-child relations and home environment. Psychoeducational assessments should cover cognitive abilities, academic skills, and social-emotional functioning, as well as other factors, such as home environment, socioeconomic conditions, quality of education, and physical illnesss, each of which can affect a child’s capacities to learn and benefit from education. African models of child development will be incorporated, such as the importance of siblings, peers, and related adult community members in contributing to child development. The latter will be conceptualized later, in collaboration with key informants from Cotlands community careworkers and other sources in situ.

Infants & Toddlers (0-2 years)

Cognitive/developmental assessment. Begin with screening (Bayleys-III) with primary caregiver; a translator will be needed. If a significant developmental delay is flagged, administer full Bayley’s Scales-III to estimate nature of delay; a translator will be needed.

Social-emotional assessment. Administer Greenspan Developmental Milestones with primary caregiver; a translator will be needed.

Home environment. Administer the H.O.M.E. at the child’s home with both child & caregiver present. Ideally, this would be done as part of a careworker’s visit, so that questions and replies can be translated. Administer the BDI-II and Coping Response Inventory in a structured interview with the primary caregiver, with translator.

Preschoolers (3-6 years)

Cognitive/developmental assessment. Administer selected subtests from the KABC-II and the Leiter to estimate child’s baseline measures of cognitive abilities.

Social-emotional and resiliency assessment. Administer BERS-2 with primary caregiver with translator. Use separate form with careworker’s observations. Administer the ASEBA and/or TSCYC with caregiver and careworker.

Home environment. Administer the H.O.M.E. at the child’s home with both child & caregiver present. Ideally, this would be done as part of a careworker’s visit, so that questions and replies can be translated. Administer the BDI-II and Coping Response Inventory in a structured interview with the primary caregiver, with translator.

Middle Childhood (7-12 years)

Cognitive/developmental assessment. Administer KABC-II non-verbal subtests, selected Leiter subtests, and Bender-II to estimate cognitive abilities. For bilingual students, add verbal subtests from the KABC-II Mental Processing Index.

Achievement assessment. Administer selected subtests from the KTEA-2 to estimate levels of academic achievement. Estimate English language competency for children receiving school instruction in English. Identify more ecologically valid achievement measures.

Social-emotional and resiliency assessment. Administer BERS-2 and Resiliency Scales. Administer to caregivers the ASEBA using Zulu or Xhosa translations where appropriate, or with translator. If child high on anxiety/depression ASEBA scales, administer TCYC with caregiver and careworker. With careworker, administer to the child the Depression and Anxiety versions from the BYI.

Home environment. Administer the H.O.M.E. at the child’s home with both child & caregiver present. Ideally, this would be done as part of a careworker’s visit, so that questions and replies can be translated. Administer the BDI-II and Coping Response Inventory in a structured interview with the primary caregiver, with translator.

Adolescents (13-18 years)

Cognitive/developmental assessment. Administer KABC-II to compose Mental Processing Index, selected Leiter subtests, and Bender-II to estimate cognitive abilities. Add KABC-II CHC ability subtests, depending on child’s English competency, to estimate full range of cognitive abilities.

Achievement assessment. Administer the KTEA-2 to estimate levels of academic achievement.

Social-emotional and resiliency assessment . Administer Resilency Scales and ASEBA YSR to child, with careworker translations as needed. If elevations on depression/anxiety scale, administer TCC and the Depression and Anxiety versions from the BYI to child. Administer the ASEBA to caregiver using Zulu or Xhosa translations where appropriate, or with translator.

Home environment. Administer the H.O.M.E. at the child’s home with both child & caregiver present (up to age 16). Ideally, this would be done as part of a careworker’s visit, so that questions and replies can be translated. Administer the BDI-II and Coping Response Inventory in a structured interview with the primary caregiver, with translator.

Proposal to Cotlands (Gauteng) for Psychological Services and Research

Below is my informal proposal to provide assessment, research and training services to Cotlands beginning next year:

Background

The HIV/AIDS pandemic has perpetuated its most devastating effects upon the poor in South Africa and in other developing countries across the world. The highest death rates occur among employable adults, decimating the income-generating members of communities, leading to lower tax income to support community infrastructures, such as education and the now over utilized health services. This cycle of AIDS and poverty has meant that South Africa has dropped dramatically over the course of the last five year on the scale of economic development, creating greater numbers of poor and people vulnerable to the virus and without adequate services. As the greatest number of infections and deaths are adults ages 20-35, the physical, emotional and cognitive impacts of HIV/AIDS on infants and children has reached a tragic scale; more and more poor households are headed by grandmothers and children who have, respectively, lost their children and parents to AIDS-related diseases. In addition to suffering the stresses of multiple losses, upheaval of their family systems, inadequate care from ill-prepared or frail caregivers, and removal from their homes, infants have been infected with the virus by their HIV+ mothers. Before ART, infection was an early death sentence for a child; with treatment, these children still face the stresses above, and many will grow up in institutional settings.
Cotlands in Gauteng has taken steps to ameliorate the suffering of children from Johannesburg’s poorest communities, for example, by:

1. Being the first in the country to offer palliative care to children with AIDS in their Hospice program, which was expanded to include treatment with antiretroviral medications when they became available;

2. Providing sanctuary for infants up to age 14 who have been orphaned or whose parent are unable to care for them, given both the complexities of antiretroviral treatment regimens and nutritional needs;

3. Providing Home Based Care (HBC) in poor communities as well as a community center for support group meetings and counseling for the caregivers, income generating projects, and material aid (food, clothing, household equipment, etc.). Food gardens are currently being developed, both in some individual grandmothers’ yards and, soon, on land offered by a secondary school adjacent to the center.

HBC employs care workers from the local communities to supervise and support caregivers in each child’s medical treatment and wellness. Care workers visit the homes of their clients, provide instruction in the child’s medical care, insure that children get to their clinic appointments and are receiving their ART correctly, help mothers and grandmothers apply for social grants, and run support groups for caregivers. The HBC program also tries to remediate the children’s developmental delays associated with the infection by providing “stimulation programmes.” Outcome data on the impact of HBC’s psychosocial and other interventions has apparently not been collected; however, it is likely that stimulation alone would ameliorate the psychological consequences on HBC’s HIV+ children of AIDS and extreme poverty. Cotlands would not be alone in prioritizing physical health, economic aid, education, and caregiver support group and saving the mental health of children and their caregivers for later.

South African HIV+ children’s mental health and cognitive developmental needs have historically been neglected in the child development research and in most intervention programs. South Africa is not the only developing country lacking national psychoeducational data. Most child development research and programming has been done with U.S. and European samples, and psychologists in western nations have not concerned themselves with internationalizing their theories and studies, particularly in those parts of the globe with the greatest needs for help and understanding. In the international and national responses to the HIV/AIDS pandemic in southern Africa, “psychological” has, until recently, been considered a less important or less acute problem than HIV/AIDS affected children’s nutrition and shelter, as if, Linda Richter (2003) suggests, their “need for food and shelter is greater than their need to feel loved by others and to respect themselves” (p. 245). The 2007 HIV and AIDS and STI Strategic Plan for South Africa, 2007-2011, makes no mention of insuring that children’s conditions actively contribute to rather than undermine their emotional and social development, and by extension their academic achievement and potential to contribute to South African society. This oversight confirms the relative neglect of orphans’ and vulnerable children’s mental health and achievement by funders and policy makers, at least in South Africa. National policies that support multifaceted treatments in the services of children’s development are crucial components of meeting the first and second UN Millennium Development Goals: (a) eradication of extreme poverty and hunger, and (b) insuring that all children complete primary schooling.

In 2007, the international problem of poverty’s negative impact on child development has come to the forefront of development concerns, supported by research reviews in the Lancet series, Early Childhood Development: The Global Challenge. Nonetheless, there is very little research on the psychological effects of HIV/AIDS and poverty on South Africa’s (and other severely affected nations’) children, including their cognitive functions, academic achievement, and mental health. Further, there is a need for “globally accepted measurements and indicators for child development that can be adapted across countries for monitoring, planning, and assessment” (Engle, et al., 2007).

Proposed Services

Cotlands Outreach Manager, Busi Nkosi, has been observing the distressing developmental and academic delays among the approximately 100 HIV+ children in the HBC program, and intends to make the children’s educational needs the next target for HBC intervention. I have also spoken to staff about and observed the psychological delays in children in Cotlands’ Educare, Sanctuary and Hospice: severe language delays are common as are interpersonal and behavioral problems grounded in early neglect, losses, and attachment failures. Because Cotlands already has begun to assess the older children’s learning strengths and weaknesses, Busi is advocating for the children of HBC to also be assessed.

There is certainly urgency for cognitive and educational assessments for school age children, which could support advocacy efforts for appropriate educational interventions and support. Yet, the relationship between poverty, remedial developmental delay, and academic achievement cries out for the research, adequate assessment measures and early childhood interventions. Busi and I proposed that I, and 1-3 doctoral-level clinical psychology students who may accompany me, administer baseline developmental and psychological (neuropsychological, cognitive and social-emotional) assessments for these children, beginning in either January or August 2009. One purpose is to have data about the HBC’s children’s current (and baseline) abilities. With that knowledge, intervention programming could be founded on the children’s current estimated development and abilities. Another purpose is to develop ecologically valid measures (with potential for global applications) that could function as program evaluation measures. A third purpose would be to adapt measures that could be administered by non-professional staff and/or caregivers in the service of longitudinal records of children’s development.

With Cotlands’ endorsement of a HBC children’s assessment project administered by me and a couple supervisees, I can then try to acquire grant funding to support our expenses (airfares, testing materials, and local transportation). I would like to propose biennial visits, each to occur in January and August, so that we can serve a greater number of HBC children. The offering of these proposed services would be contingent on acquiring adequate grant funding.
I would also like to request permission from Cotlands to do research on the assessment project; this information would make an important contribution to the psychological literature on vulnerable children with HIV/AIDS. The data would also provide a foundation for the HBC program to develop intervention projects and then evaluate the outcomes of interventions. Confidentiality would be maintained for all participants. With preliminary support, I will develop a research proposal for Cotlands Institutional Review Board.

Susan E. Hawes, PhD
Professor, Clinical Psychology
Antioch University New England
40 Avon Street
Keene, NH 03431 USA
shawes@antiochne.edu

References

Engle, Patrice L., Black, Maureen M., Behrman, Jere R., Cabral de Mello, Meena, Gertler, Paul J., Kapiriri, Lydia, Martorell, Reynaldo, Young, Mary Eming, and the International Child Development Steering Group (2007). Strategies to avoid the loss of developmental potential in more than 200 million children in the developing world. The Lancet, 369, 229-42.

Grantham-McGregor, Sally, Cheung, Yin Bun, Cueto, Santiago, Glenwwe, Paul, Richter, Linda, Strupp, Barbara, and the International Child Development Steering Group, (2007). Developmental potential in the first 5 years for children in developing countries. The Lancet, 369, 60-70.

International HIV/AIDS ALLIANCE (2006). Young Children and HIV: Strengthening Family and Community Support (Building Blocks: Africa-wide briefing notes.

Jolly, Richard (2007). Early childhood development: The global challenge, The Lancet, 369, 8-9.

Rochat, T. & Hough, A. (2007). Enhancing Resilience in Children Affected by AIDS: Children’s Views and Experiences of Resilience Enhancing Family and Community Practices (published by the Human Sciences Research Council in South Africa).

Singhal, Arvind & Howard, W. Stephen (Eds.) (2003). The children of Africa confront AIDS: From vulnerability to possibility. Athens, Ohio: Ohio University Research in International Studies, Africa Series No. 80.

Walker, Susan P., Wachs, Theodore D., Gardener, Julie Meeks, Lozoff, Betsy, Wasserman, Gail A., Pollitt, Ernesto, Carter, Julie A., and the International Child Development Steering Group (2007). Child development risk factors for adverse outcomes in developing countries. The Lancet, 369, 145-57.

Home Visits in Soweto

This has been a week of no visits to the Outreach Center; Meisie was in a car accident yesterday morning and, though she's okay, is weakened by aches in her muscles from the impact. She is staying home to recover the rest of this week. I have been doing research on systems of care for vulnerable children in South Africa.

However, I did want to report on events before Meisie's accident. A week ago today, after our usual late start, turned into a full afternoon of home visits to Nomsa’s granny clients around Soweto. Our task was to distribute donated school uniforms to seven grannies for the HIV+ children they care for, entering their homes and chatting with them for a bit. Meisie encouraged me to take photos of each granny and they seemed happy to have photos taken of them and their grandchild/grandchildren. The poverty and cleanliness of each grandmother varied quite a bit. The first granny we visited lives in a one-room tin shack; neat piles of children’s laundry covered a single bed, but the “kitchen” wall was cluttered and the space was dark and rather dismal. Margaret, the grandmother was warm towards us, though she was clearly unwell and almost emaciated. Meisie told me after we left that Margaret was “positive” but has taken no steps to deal with her illness until, maybe, recently. She told Meisie that she’s been tested, but refuses to come to support group. It’s difficult to understand the degree of denial that can squelch concerns about the children’s welfare. Who will look after her grandchildren after she dies of AIDS?

Almost every granny was doing laundry or ironing when we arrived! Nomsa gave each of them a rather hideous knitted ski hat and scarf—all donations. About three grannies were not home, but we were able to leave the uniforms either with the children or a neighbor. The uniforms are for the children who are HIV+. Donations of uniforms may make the difference in whether a child can attend school or not. Some of the kids also got shoes with their uniforms.

One home we visited stood out dramatically from the others because it was bright, well-furnished, decorated with bright patterned curtains and chachkis, such as animal statues, a head of Mandela, pottery, and a beautiful enlarged photo of her eldest daughter in traditional Nbele clothing. The leather couches, while very worn, were shiny-clean, with linen squares of embroidered cloths along the backs. The granny showed me her beautiful, new tin bucket that she uses to get water for cooking or washing, as well as the two tin shacks in her back yard where her sons live. It was all very neat, and one shack had a rustic sculpture near the door made of metal and string. She was very proud of her home; as we left, I noticed and commented on her succulent garden at the front of the house. Her grandson, who seemed about ten years old, was quiet but polite and sweet. His head was covered with lesions, probably karposi’s sarcomas, and he was very thin. But, he was eating a sandwich he made for himself when we ended our visit.

Across the road and over the dusty red-dirt ‘yards’ was another client’s home, tucked behind a brick house. There were two shacks there, as well as an elder couple who seemed to live in one of the buildings. The client was not home, but someone went to fetch the two children, who would receive the uniforms, and the elder neighbor woman would sign for them. The children were delighted with their uniforms, which they took inside their shack (after posing for me). Meisie told me that Cotlands had built the shack for this granny & the children because it had been too crowded for them in the house fronting the road. It was a one-room shack constructed of corrugated tin. Cotlands also makes sure that each client has a small refrigerator (to make sure the ARV’s are kept cold), a stove, and a space heater. None of the homes we visited had running water and used outhouses for toilets. In one home, an entire room was filled with a queen-sized bed covered with stuffed animals for the children.

Home sizes varied from one room to four—I don’t know how many people actually lived in each, although none held fewer than three people. Men were few and far between. In the back of one home, the yard for two shacks and a house, several men were building coal stoves out of scraps of metal or old appliances. Another backyard that we entered held a shack and a shabeen. The client was not at home in her shack, so Nomsa had the shabeen owner accept and sign for the uniform. Four very drunk men sat outside the shabeen with their almost-quart-sized cups, filled with a yeasty brew that has high alcohol content. Alcoholics, the men will spend every cent they should to buy food on drink, much like alcoholics the world over. The little girl client appeared as we were leaving, running up to and embracing Nomsa with a huge grin on her face.

The last home I will describe was, as most of them, at the back of a house fronting the road; four children sat on a wall and got very excited by our appearance (and my camera). Meisie showed me the house garden next to the granny’s shack, which Cotlands had helped her start, and which she had added to. While it was impressive, I am skeptical that it would ever provide a significant amount of food for the family. Meisie’s goal is to have every granny in the program have a home garden to help decrease her poverty. This garden had a primitive wire fence, a box of used plastic bottles at the end, and a pile of trash or some stuff at the other end. There is much to be done with such chronically poor people, even these who are so committed to improving their lives and those of their grandchildren.

Cotlands Memorial Wall & Nkosi Johnson

Yesterday, I was taken to see the Cotlands Memorial Wall in Johannesburg's Westpark Cemetery. The wall was erected on International AIDS Day, December 1, 2001 to memorialize the children in Cotlands' care who have died from AIDS. During the period between 1996 and 2004, before Cotlands was able to introduce ARVs (Antiretroviral treatments), between 3 and 6 children died each month (51 in 2002); there were only 8 deaths in 2005, and even fewer in recent years. Since 2001, two more walls have been added to the first memorial wall to house the ashes of deceased children, most of whom were orphans or had no family burial place. I think there were 15-25 plaques on each side of each wall, with the years 1999-2001 each using up an entire side. Westpark Cemetery also has the grave of Nkosi Johnson, the longest living child born HIV+, whose white adoptive mother made his fight against AIDS part of a crusade to inform the public of the pandemic and to confront Mbeki's government for it's neglect in providing public access to antiretroviral treatments. He died at age 12. His adoptive mother started a foundation for HIV+ mothers and their children, named Nkosi's Haven. Just before I left the U.S., I read a book about Nkosi by Jim Wooten, We Are All The Same: A Story of a Boy's Courage and a Mother's Love (2004). Nkosi was an invited speaker at the XIII Annual AIDS Conference in Durban in July 2000, and the standing ovation he received for his plea to ANC government to provide AIDS treatments was a public embarrassment for President Mbeki, who walked out of the session. In 2005, he was awareded posthumously the first KidsRights Foundation's international Children Peace Prize in Rome.

It was somewhat disturbing to see the obvious neglect of Nkosi's grave in Westpark; the neighboring marble structures were polished and clean with fresh flowers on them, while Nkosi's was dull, littered with bird droppings, and had a meager flower arrangement. Odette, who brought me to see the Cotlands Memorial Wall, visits the cemetery regularly because a relative lies there; she said that Gail Johnson never comes to take care of the grave, even though she lives nearby.