Thembalethu Report (April 2007 – February 2008)

The past ten months since Thembalethu started have gone by in a flash. We’ve learned and done a lot in the process. A great deal of time has been spent in developing relationships, systems and policies, as well as the organization itself. Through the Home-Based Care givers generosity, and with the support of Winterton Methodist Church, we have been able to help a large number of sick people get improved home palliative care, and provide advocacy and assistance for patients in accessing ARV and TB treatment. Additionally, many orphaned families have received advice and advocacy to help them access Social Welfare grants, as well as food assistance.

Summary of Activities

• Working with 30 Home-Based Care volunteers in 10 different villages of Emangweni (Loskop) who have cared for 96 patients since April 2007. Of these, 70 remain under HBC care, the bulk of these fully ambulant and strong, many of these stabilized and supported with treatment adherence support. We have been very sad to have lost 26 other patients over the course of the last six months. Our focus has been primarily HIV/AIDS and TB cases, which make up a total of 95 percent of all HBC patients.
• Supporting HBC volunteers in monthly support meetings to monitor patient status, do on-going training, and find solutions to patient situations. Introduced and trained HBC volunteers in filling out patient forms to monitor patient health, visits, trainings and information conveyed, and their children.
• Distributed veggie seeds (onion, spinach, carrot, beetroot, and pumpkin) to 30 home-based caregivers for their family gardens and to assist their patients and neighbors in need. Additionally, we are distributing seeds to the orphaned families and indigent patients that we are supporting who are interested in planting veggie gardens.
• Distributing protein-packed nutritional booster porridge to critical immuno-suppressed Home-Based Care patients. Over 110 packets of porridge have been distributed to date.
• Gave out food hampers to 35 Home Based care volunteers, the first they had ever received, to thank them for their voluntary work with the sick and orphaned in their communities.
• Meetings to initiate and strengthen relationships between the Local Tribal Authority and Local Municipality, as well as local Social Workers, the Injesuthi Clinic, including the TB tracer, and the government’s paid Community Health Workers. On-going collaboration and cooperation with these partners to better reach the community. Referral letters to the clinic, hospital and social workers are assisting with patient and orphan care and access to resources. Rape cases that had been going on for months without intervention have been expediently and effectively handled by collaboration between the HBC volunteers and the social workers.
• Supporting 27 families of orphans and vulnerable youth (83 children in total) with advice and assistance in obtaining foster care grants and other social welfare assistance. Also, helping meet their immediate needs for food, clothes, blankets, etc.
• An HIV/AIDS awareness and prevention presentation to 120 school children in grades 4, 5, 6, and 7 a (October 2007) and an HIV/AIDS awareness presentation to 35 parents at Madolobheni Primary school. (November 2007)
• 83 individuals tested and counseled in two days for HIV at a successful VCT drive in Gourton, at the municipal offices. The VCT counselors from Estcourt Hospital came to help us out with this, and plans are underway for the next VCT drive after the first was so successful. (September 2007)
• Registration of Thembalethu Care Organization as a South African Non-Profit Organization is almost finished.

Challenges

Social Welfare: There continues to be a major backlog at the local Amangwe Social Welfare (Child Welfare South Africa) office, where as many as 100 cases dating back to 2003 have fallen through the cracks. Additionally, there are many cases where we’ve been able to assist orphaned families in accessing the emergency three month food parcel, only to find that after the three months, their case is far from being finalized for the foster grant. This is aggravated by the inexperience of the social workers and their NGO’s six month lack of a supervisor which has created an even bigger backlog of recent cases waiting to be signed. With a committee of other concerned community members, we've just sent various letters to the Department about the NGO's lack of service delivery and the resulting unnecessary suffering of orphans and vulnerable children.

Training: Almost three years ago, Xoli was trained as a trainer of Home-Based Caregivers by the Department of Health. We have been working with various other HBC organizations to try to find additional train-the-trainers courses on the recent developments in HIV/AIDS, TB, and ARVs, without luck. It seems in the past few years the trend has been to move to Professional Nurse trainers/managers of Home-Based Care programs. Nevertheless, I will continue to look for a refresher course for Xoli, and into other training sources.

Looking Ahead

Working together with a local businessman, another local NGO, and the Imbabazane Municipality, a Loskop Support Centre has been opened. The initial plan is to used the municipally-donated buildings to cook orphans and vulnerable children food before and after school, and to help with their school work until they receive the social assistance provided by the government. Additionally, Voluntary Counseling and Treatment (VCT) services are to be provided, giving the community a much-needed alternative location to test for HIV.

A three-day Direct Observation Treatment (DOTS) TB training for all HBC volunteers is in the pipeline for April 1-3. The first part of Christian Listener’s three-part training, Learning to Listen, is scheduled for early May. The following two trainings (Listening in an HIV+AIDS Environment and Listening to Children in Difficult Circumstances) are set for August and November.

We are also continuing to seek out trainings in nutrition and ARV treatment literacy, as well as community care of orphans and vulnerable children, although additional funding sources may be needed to make this possible.

Financials

ADDITIONAL INCOME (above church sponsorship, from South African and US Sources): R 54,300.90

THEMBALETHU EXPENSE BREAKDOWN TO 31 Oct 2007

R 1,162.03	Admin
R 6,875.82	Communication
R 21,386.65	Total Program Expenses
R 70,000.00	Program - Bakkie
R 19,523.82	Transport (Petrol +Maintenance + Insurance)
R118,948.32	TOTAL

Babes galore

In desperate need for a place to live, Slindile (18) with four month old Alwande and 22 month old Lusanda "Buki" moved in with me in late October. What an adventure it's been to deepen my relationship with Sli, to to journey with her through raising two young babies. It has been a journey of joy and struggle: being waken many nights to crying babies, watching a growing Buki eat phenomenal amounts of food and grow in his understanding of language (Zulu and some English), being thrilled by little Alwande's first smiles, and helping Sli get the supplies and helps she needs to get back to school.

Back in late October, after her fiance's continued infidenlity, Slindile, whose mother passed away when she was 12 and whose grandmother has been missing for almost two years, had no place to go. She and her three younger siblings have been like family to me for the past four years, so inviting her to move in was the most natural option for her. Sli and her two babies moved into my house with me, and I've been supporting them ever since. After being out of school for two years with her babies, Sli is enrolled again, attending grade 9. Plans are currently underway for her to move into a place of her own, and continue her studies.

Additionally, Slindile's 10 year old sister moved in with us for a month back in November after sexual abuse at the unregistered orphanage where she was staying. Her younger sister, and two younger cousins were all moved by social workers to a place of safety, and will be soon placed in a family at SOS Childrens Villages.

Slindile hopes to be reunited with her grandmother, and get a place of her own so that one day she can again care for her three younger 'siblings'. If you are interested in helping to fund Slindile to get a place of her own (buy the land, put up a simple house), please let me know. It will cost between $1500 and $2500 to get her set up in new digs, an amount of priceless value in supporting an orphan and potentially her younger siblings as well.

Battle for life

Little Sandile here in the arms of his HBC volunteer Buyisiwe, was only eleven months old when he lost his struggle for life. He was HIV+, but the health system failed him. First they didn't have the special tests on hand to test infants under 18 months, then the results took 2 months instead of the stated 3 weeks to come back. When I accompanied his mother, ill herself, but getting stronger on ARVs, to the clinic to get the results, they were positive. The VCT counselors at the clinic who gave the results told his mother that he needed to come back on Monday, in five days, to give blood for the CD4 test that would check his immune system strength.

But we all could see his waning health. Just having finished six months of TB medication, little Sandile's oral thrush and sores got worse with time, despite trips to the clinic. That day I spent with him and his mom, poor Sandile spent the entire day crying, feverish and with oral sores all through his mouth and throat which were aggravated everytime he coughed.

Not wanting to accept the apathetic, bureaucratic response from the 'AIDS experts/advocates' at the clinic, I called the nurse I often work with at Estcourt Hospital's ARV clinic. I explained the baby's HIV results had just come back positive, that he had just gotten off TB treatment, and that he was ill. She said the doctor should see him right away, that he would judge the baby's immune strength by having a look at him, instead of waiting 3-4 weeks for the CD4 results to come back.

Sandile cried almost non-stop in the waiting room of the ARV clinic, and once the doctor saw him, wrote up a prescription for his ARVs on the spot. After a lot of experience in the hospital herself, his mom didn't want him admitted to the hospital, so after picking up a big bag full of medications, we left again for home.

Despite our best attempts to help little Sandile, four days later, he passed away.

Please pray for his mother's comfort, for her own fragile health, and for the health of his 6 year old brother Senzo. Please also pray for comfort for Buyisiwe, his HBC volunteer, and for his granny who has been his primary caregiver.

Lindiwe

I met Lindiwe late one morning in the Home-Based Caregiver’s home. She was sitting on a Zulu mat on the floor, covered in a blanket to keep the winter chill away. She was clearly sick, and had spoken with the home based caregiver for assistance. The symptoms of TB were evident and upon our advice, 34 year old Lindiwe, the mother of three, went to the clinic to get the sputum bottles to check for tuberculosis and to get an HIV test. As it became obvious that her finances were keeping her from fetching her TB results and doing the two day ARV adherence training to treat her HIV, we assisted her with the transport to get to the clinic. As predicted, her results came back positive for TB, and after time we found her CD4 count to be 142 – low enough for her to need quick ARV access, but this wasn’t to be.

The June public strikes interrupted Lindiwe’s access to treatment, starting just as she most needed the ARVs.

As the strikes dragged on into their final days, Lindiwe developed meningitis and was admitted into the hospital. At that point, the meningitis was too strong and her immune system to weak to start the ARVs. She never made it out of the hospital, leaving her two daughters, aged 14 and 20, without their mother, staying alone without any income. The last time I saw her, she asked me to look out for her girls. Fortunately, their father is working in Durban and thus can provide maintenance to care for the younger, schooling daughter. Accessing this support, however, has not been expedient: for three months, the girls got food vouchers from the social workers. Those three months have just come to an end, and their case is still no closer to being resolved. I’ll be bringing them food again to ensure they don’t go hungry, while urging the social workers to work through their case quickly.

In case after case with HBC patients, there is the bitter-sweet heartache and joy of assisting patients sick with HIV/AIDS. For some, like Lindiwe, our assistance has left a mark of love and care while not succeeding in lengthening their life, still leaving orphaned children behind to look after. Although increasing numbers of patients are accessing life-saving treatment, Home Based Care for the sick and orphans too often go hand in hand.

The beautiful thing about working with Thembalethu is being able to be with both situations in their greatest need – to share love, care, prayers, resources and health advocacy. On the behalf of all of those whose lives we have touched, THANK YOU for making this work possible!

Not a family untouched

During a recent home visit with home-based caregivers, we spent some time overlooking this small valley with houses and homesteads in every direction, almost as far as the eye can see. Over the past couple of months, it's become clearer to me that every homestead has a story, and almost every one of these stories is interwoven with HIV/AIDS tragedy. The more that I go on home visits, supporting the home-based caregivers, the more I come to understand the reality of AIDS - not a family remains untouched. They've all lost an uncle or an aunt, a mother or a father, a child, a cousin or even a grandparent to the disease.

As I stood on the ridge that day, overlooking the various clusters of homes, I asked about the stories of each family. "That single isolated mud hut over there, who lives there? And that one house left standing with all the other buildings in various stages of decay, who is living there?" Everywhere around, AIDS and poverty go hand in hand.

• The one house with a single mom and her three pre-teen kids without any income, the family extra vulnerable to the threat of infection and problems accessing treatment. I just met one such family, a lovely mother named Lindiwe who left two girls behind: a 20 year old and her 14 year old sister. Lindiwe fought a losing battle against HIV, tuberculosis and meningitis. The July public strikes caught her at a time when she was in desperate need of attention for the meningitis that eventually killed her before she could start the life-saving ARVs. With their mother's death, the girls were left without any income at all. We've been able to help Lindiwe's two girls access government child grant for the older one's small baby, and are working with the social workers to access child support for the younger daughter from her absent but employed father.
  
• The gogo whose adult children have all died, and is left caring for seven orphaned children on less than $100 a month, who is too frail to repair the crumbling buildings all around her. Working with the 19 year old who is prepared to take on the care of her younger siblings, we've linked them up to government crisis food provision while we push for their foster care grant to be processed. Their three months of food provision are about to run out, so we will be simultaneously providing them with additional food parcels while putting pressure on the social workers to process their case.
  
• A orphan-headed household run by an 19 year old girl with her 17 year old sister, and 7 and 4 year old nieces - left behind by two generations of parents and elder siblings. The recent rains are running through their second-hand tin roof, threatening to erode away two different walls of their house. They are already vulnerable in their situation, the 17 year old often running away with boys in a habit of finding a way to provide for herself, making her situation and her vulnerability to HIV all the more real. We are making the necessary repairs to the roof to keep the house up during this season. We have referred their case to the social worker's for the three month food assistance, and pushing the case through to get the orphan grant.
  

It's been a couple months of intense ups and downs. Realizations of the degree of need in the community, the discovery of numerous orphan-headed households who we have managed to link up to government assistance, to find out that the government's timeline for temporary assistance (three months of food parcels) isn't up to par to with the realities of their service delivery. Finding orphaned young people or widows staying alone and isolated without anyone to help them when HIV, TB, and side effects bind them to their sick bed. And yet seeing the amazing generosity and ubuntu of the community in bringing them food, fetching water from the community pump for them, bringing them firewood, washing them, and being their health advocate. Xoli and I were recently doing an inventory of all of the patients under the care of the Thembalethu Project. We have 70 patients being looked after by 30 home-based care volunteers, a huge testimony to their generosity, love and service to their neighbors in need. And yet, we have lost 26 patients over the past six months, most to a debilitating HIV related disease that could have been prevented if they had faced their HIV status earlier. And yet the number of people assisted with transport funds, immune-boosting porridge, moral support, and tender palliative care continues to increase, and those who access ARVs in time also is improving.

Last month we had a hugely successful VCT drive, bringing in HIV counselors from Estcourt Hospital to the tribal court to test and counsel willing members of the Amangwe public. Over the two days of VCT (voluntary counseling and testing), 83 people were tested for HIV including a large number of our Home-Based Caregivers. We are working with the hospital counselors to plan another HIV testing drive in the next couple of months, combating the 'small town' confidentiality breaches that suppress people's desire to get tested in the local clinic.

At our last monthly HBC support meeting last Monday, we also gave out veggie seeds (spinich, carrots, pumpkin, onions and beetroot) to all the home-based caregivers for their family veggie gardens and to share the excess with their patients and vulnerable children in their neighborhood. When on Thursday I was doing home visits with some of them, in their enthusiasm most had already planted their seeds. With the hugely positive reception, I've bought some more seeds to give to orphan headed households, and very vulnerable patients.

I feel so honored to have your support and prayers to be involved in all of these people's lives, to bring support to the HBC ladies in caring for the vulnerable in their communities. May God bless you for making this work possible!

Also check out the new prayer requests in the right column.