It has been a busy few days since our last post. This is a lengthy message, but we hope some of you will find some of the updates interesting. We are covering a lot of new ground, so there is a lot to share...
08/17/09
The agenda for today was supposed to be meeting at the Ministry of Education. While it is not entirely clear to us exactly what the situation is, we do know that university students have been sent home for a two-week break; a cool down period after some ugly protests. The ministry people are busy with this and so we went to the hospital to see their autism assessment center. Derek, Matt and I were actually really excited about this change in plans; we were all hoping to visit the hospital while in Lusaka. We met with some of the staff involved in working at the autism assessment center, as well as Simate Simate, a volunteer in the Hearing and Speech Center (HSC). The HSC is not meant to function as a provider of hearing aids, but they have taken it upon themselves to do so. Parents do pay, but it is subsidized. Mr. Simate spoke with us about the process for providing support to those in need of hearing and speech supports, as well as his thoughts on needs for the HSC. As we have already heard here many times, early intervention is an issue. There are no hearing supports for children under pre-school age as they have no aids to fit them. The hearing aids they receive are mostly second-hand donations, which are then refurbished by technicians, and distributed to children (no adult services) who are deemed in need of them. Among the needs identified by Mr. Simate are a need for auditory trainers, tools to have successful early interventions, and training on how to use such tools. As with all the organizations we have encountered, the needs list is long. Another major issue is communication between parents and children. When children do learn sign language (American), the parents do not, and there is little way for parents and children to communicate with each other. There is also no work going on in speech therapy, and Mr. Simate noted the name of the HSC is a misnomer in this way.
Our next meeting was with Mr. Chongo, a physical therapist in the Center for Excellence. His work was made up of much more than working on autism, and he expressed that there are so many life-threatening conditions that they are dealing with at the hospital, that disability often takes a back seat. Basically, people are only seen for autism assessments if they present at the hospital for another condition and are then referred for an autism assessment. Mr. Chongo gave us a brief history of the work on autism at the hospital, which started with conversations in 2006. In 2008, the hospital started doing assessments, and within six months they identified 700 children. Currently, 50 children are being worked with at the clinic and there are three specialists including Mr. Chongo, an occupational therapist, and a speech therapist. For assessments, a pediatrician and a the parent also joins the team. They all conduct the assessment at the same time, taking notes while observing the child over 30 minutes. Mr. Chongo noted this is obviously not enough time to properly diagnose someone. They also rely heavily on sifting through past medical records and making judgments based on past notes that may indicate presence of autism. In the work they conduct after assessment, the therapists see the child and parent for 6-8 weeks, attempting to transfer skills to the parent on how to work with their child. After this, the parent and child work at home together for a month before coming back again to check in on how the work is progressing. We had the opportunity to walk through the assessment room, which doubles as the therapy room. It was very busy with two medical personnel, a parent who had been through the process and returns as a volunteer to work with other parents, and a roomful of children and parents all busy at work.
Mr. Chongo was really impressive to talk with. Though he spoke of the vast lack of knowledge across medical personnel at the hospital, it was clear he himself had taken pains to learn a lot, and he had a lot of good insight in to the Center’s needs. Some of these include training for staff, including pediatricians, as, like in the US, the medical doctor “has the final say.” Also, in Zambia, all children are required by law to visit a nurse once a month until they are five years old. Apparently there is good compliance with this, as the records are required to attend school. I wonder about compliance in the rural areas, but, for Lusaka, this seems to be the way it is. That said, nurses need training as identifiers of children in need of services. Mr. Chongo related to us that there are no supports for follow through on recommendations and supports. For example, a child may get a recommendation that says “fit for school” and that is where it ends. The child then goes to school without supports and is treated as a “nuisance.” In summary, Mr. Chongo told us that the missing link in Zambia is an interdisciplinary understanding of autism.
Briefly, Mikaela talked to us about her success in working with a girl with autism using CDS materials. After working with the girl using the “ABC” materials, the father returned to Mikaela and told her “I never thought I would be able to sit down and have a conversation with my daughter.” Mikaela has been asked to write a national course for autism. She is hopeful that the CDS course on autism will be helpful, and that more information and support can be provided. She is so committed to this work, it is wonderful to witness both her and Nama work, seemingly endlessly, around here.
8/18/09
Today, Tuesday, was another great day in Zambia. Despite the blue skies we were told it was unseasonably cold. As a Minnesotan in Zambia I was surprised how chilly it was. The day was also highly productive. Initially we were scheduled to provide advocacy training to parents from the Hidden Voices, a school specialized to provide education to children with disabilities. Unfortunately the Hidden Voices parents did not receive adequate notification. Initially we were unsure and pretty concerned about the appropriateness of our training and discussions for this new group but after introductions we were quiet excited and relieved to have the attention of our guests. They included five people from Parent Partnership Association for Children with Special Needs, an existing advocacy organization in Lusaka that is working to, according to their brochure, conduct training and assessments, operate a community school, and create disability committees in nine districts of Lusaka. Two people were from the Association of Parents with Special Learning Needs, an emerging national parent advocacy group that recently drafted its constitution and is nearly ready to register with the government. Professionally, these participants ranged greatly. Three had children with disabilities, one of which was also a Headmaster of a school. One was from the Ministry of Education and soon to be a Headmaster of a new school. Another was a Coordinator of Hidden Voices, and another woman has been working with parents and children with disabilities for thirteen years. She raised her own child with a disability with little to no supports, and now works to educate, support, and reduce stigma amongst parents. In all, we found the participants to be strategically positioned in their respective communities and professions to continue and expand their leadership and be effective agents of change in the area of disability supports and rights.
After recognizing our change in audience we quickly adapted the training to better meet the group’s higher sophistication in the disability arena and their organizational needs. A large portion of the training and discussions addressed topics of inclusion and normalization. Normalization in particular was a topic that resonated with the group, which led to an exciting discussion about ideas, experiences, and strategies. We also discussed employment and watched a video. It was clear to all of us that the group was thinking creatively about ways the current business community, individuals and families, and educational system could facilitate employment opportunities. Some ideas that we worked with included micro-enterprises, resource sharing, and skill development. We were able share our observations and learn a lot from the group’s experiences. The final topic we discussed with group encompassed strategies to plan, develop, and implement the type of social changes the respective groups were looking to make in their communities. Our hope was to provide some technical assistance in these organizational development and strategizing processes.
A few of the most exciting pieces of this training event were, first, the enthusiasm and dedication of this group. They were so interested in getting this knowledge so they could educate others that we provided each of them with the PowerPoint presentation so they could train others about these topics. We were also amazed how much this group engaged each other. As important as the training information was, we thought the most important outcome of this gathering was connecting these individuals and groups. It is clear that they understand the power of numbers in the advocacy world. Part way through the training, they all exchanged information so they could be in touch again. That was a huge success in our eyes, as well as the group’s.
Later, we took a walk into the Bauleni compound with Mikala’s daughter and another student here. It is about three blocks from where we are staying. The poverty we saw was unlike anything any of us have seen. There is a serious lack of water, sewage in the streets, children playing, working, washing, eating, all amongst garbage. In the rainy season, Mikala told us, most of the schools shut down because there is so much diarrheal disease. We asked the student touring us around what he thought we should take away from this and he said, “Zambians need education for a better life.”
8-19-09
Today we had a training with a group of teachers, some from special education schools, and some from basic schools with one or two classrooms for children with disabilities. There seems to be no age grouping for students with disabilities in many cases, so several teachers reported that they taught children ranging in age from 6 to 25 in the same room, which must be challenging at the very least. The group was well trained, most of them being graduates from ZAMISE, but many of the general topics that we cover in what has become our standard training were still new. Of particular interest was a section that we developed last night, at Mikela’s request, about positive behavioral supports. This was fairly well received.
An association of special education teachers has formed, but does not seem to be working with the parent groups yet, so this was a big point of conversation… that merging the efforts of the parent groups and teacher groups may help to raise the profile of the emerging disability movement if the groups can agree on basic goals and methods of advocacy, which seems quite feasible at this point as everyone seems concerned about providing educational opportunities, vocational training and opportunity, and reducing stigma.
Today was the anniversary of the former president’s death, so many people seemed sidetracked by the memorial events. He was hugely popular for fighting corruption, which, of course, is rampant. It’s interesting that the top news stories of the week have been the memorial for a president who fought corruption and that another former president, who had been charged with stealing a half million dollars worth of public funds, was acquitted by the high court, even though everyone seems to recognize that he did embezzle the funds. Irony.
8/20/09
First, and most importantly, before we get to activity updates, some absolutely amazing news… Mikela is one of five finalists to be named “Woman of the Year” for her efforts supporting and advocating for people with disabilities. Here’s what we know so far…
We were driving home from the reptile farm—where we saw many of what can only be described as a place of a few of Mikaela’s LEAST favorite things. Both she and Sister Nama endured it more than enjoyed it. We were sitting in the car preparing for the bumpy ride home (seriously—how none of us lost our lunch on that road…) when Mikaela received a phone call. It began with “We are live on the radio!” and went on to ask her a few questions that did not seem to follow the announcement of being live on the radio. “Are you Mikaela? Do you work with children with special needs? Do you know so and so?” and so on. We sort of thought, as did Mikaela, that she was about to receive bad news (save for the being live on the radio part). She said that she often receives such phone calls with that line of questioning when she is getting bad news on a child passing away. However, this call was of a much different nature. All of sudden we heard Mikaela saying, very excitedly, over and over again, “Oh thank you! Thank you so much!” and when she got off the phone, she was thrilled to relay the news that she is a woman of the year, an award for all of Zambia. She was nominated for the award by a very appreciative mother. There are now five finalists, who are women of the year, and another award will be given Monday for the one person chosen. Very exciting! It was only fitting that a minute or so after she got off the phone, she received another call. We remarked, “Wow—news travels fast—were people calling to congratulate you?” She said, “No, that was about a project I am working on with….” We all agreed, “That’s why you’re woman of the year!” Congratulations to Mikaela for this very wonderful honor!
Today we also visited the University of Zambia’s Special Education Department. We were meant to introduce the College of Direct Support, but internet access was quite poor, so we ended up explaining the CDS and its functions, and then talked about the special education curriculum offered at U of Z and how lecturers may be able to insert principles from CDS into their teaching. The crowd included the assistant dean, a couple lecturers, and three students who were very keen to learn, as are most students we have met here. The resources are scarce. Some of the textbooks they use are from the 1970s, and often times, students must share just 1 or 2 books among the whole class. They also have no access to modern journal articles, even online, so access to a tool such as CDS has the potential to revolutionize parts of their teaching and learning, but only if internet can hold up. Overall, this was a positive visit. The attendees were able to envision ways this could be useful in their practices. We agreed to get all attendees access to the CDS so they could determine appropriate ways to incorporate the training material in their training. They were also very interested in other partnerships where we could share information and collaborate.
We made a quick stop at Hidden Voice School as well, but there wasn’t much action since the students are on break. Parts of the school have had a new coat of paint, and some new ramps were built by a youth group that was here recently. They are expecting to have 20 students this year, with three teachers and one volunteer, plus Aggrey, the director. There is a great building on the other side of the school that could be turned into a skills training area for older students in transition to work. Service to older students is a massive problem since public transport is expensive and cannot offer accommodations, and parents cannot carry their children after they get too big. We talked about the idea of community education, whereby a teacher would visit older children in their homes. This happens on small scale, but funding for teachers is scarce, and people will not volunteer without expecting payment. This expectation of payment for everything (“volunteering”, attending meetings, etc.) is a real barrier to moving people with disabilities ahead in society, but until people are able to feed their families from other employment, it’s a tough problem to solve. On the other hand, if communities that have minimal financial resources are unable to identify and exploit the existing resources, such as each other, the barriers these communities face will be exacerbated. We have seen that community groups and voluntary advocacy organizations are present and growing, so there is hope that others will take notice and adapt their approaches. We asked Mikaela what she thinks needs to happen here to make some immediate impact and she responded that parents need to get involved, volunteering in and for the schools. When a school needs a new building the parents need to come together to either raise the funds with assistance from the broader community or they need to assist in the actual labor needed to create a new school. The community groups and the leaders in the disability field that we met with during this trip and previous trips are hopefully the leaders that can start that movement.
We ate pizza today!!!
