After an all-too-short visit with my friend Nduta, who has been fighting to make sure that children with disabilities in the Kibera slums get help, I joined up with Emma Shah for a 2-day stay. Emma is a part-time SLP working out of Aga Khan Hospital, as well as a full-time Mom, and a host of other roles that add up to much more than 24 hours each day. Emma's three children, 6, 9 and 11, are delightful - bright, articulate, and excellent conversationalists.
Emma has a truly varied caseload, so different than mine. We saw two young "locked-in" patients (saw them twice); an older gentleman with aphasia, an attorney with spastic dysphonia, a 12-year old stutterer, and a young woman with word-finding problems related to a possible neurological insult in childhood. Emma has been exploring AAC supports for the two locked-in patients and for the older aphasic patient.
We saw Mr. G in his home, by far the most spectacular home I've visited, with lush, beautifully landscaped grounds to match. His family was hoping he might benefit from a recently-purchased iPad.
We tried a couple of communication apps, and Mr. G smiled broadly when he realized his touch of a picture elicited a verbal message. He continued to experiment with the boards we had created while we reviewed programming with his tech-savvy young daughter-in-law.
T is a 23-year-old young man who had managed his own business outside of Kenya before suffering a subarachnoid hemorrhage that left him with a few inconsistent, barely discernable movements.He had been marginally successful using eyeblinks to respond to questions or to select letters on an alphabet board. Eye gaze appeared to be a much more reliable mode. He consistently and correctly (we checked with his mother) responded to questions by looking at "Yes" and "No" signs we taped on the walls of his hospital room. We also found a barely perceptible but fairly reliable head nod, just enough to activate a computer mouse (we had no actual switches to try) placed just below his chin. Of course, this kind of consistent response creates the potential for switch control of all sorts of computer applications, including text to speech and email, as well as switch control of an iPad , which his family already owns. His mother was interested in exploring different apps for communication.
R is 12, and had suffered brain stem damage in December of 2011 related to a congenital malformation. He appears to have no consistently reliable movements. Our timing was unfortunate both times we visited - the first time he was dozing off after a particularly strenuous ocupational therapy session. The next day we caught him about 3/4 through his OT session - his nurse had decided to take him to therapy early. Emma was beginning to have some success getting eye blink responses using a talking mat (a picture and mat system that has been used extensively in the UK; particularly successful with adults with aphasia and dementia). We also noted a possible small movement switch site at his left temple.
These cases illustrate an essential and unfortunate truth about communication devices and supports in most of Africa. Only a tiny percentage of families can afford mid- or high-tech AAC solutions, but money can't overcome the lack of high-tech expertise and infrastructure. All the speech therapists I met in Nairobi were very dedicated and extremely knowledgeable, but there are only 7 in a city of more than 3 million, and most work part time. The variety of communication issues is so great that specialization is an area that most people cannot afford would be impractical. Technology costs 2-5 times more than in the U.S., and there are no experts to help with programming or to troubleshoot device issues. Charging of any sort of electronics depends on the vagaries of the power grid, which is reliable in its unreliability - power outages are the daily norm rather than the exception. Batteries are expensive.
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