newsletter november 2006 eksb ek - sandta · the day programme was started with an exciting...

SOUTH AFRICAN NEURODEVELOPMENTAL THERAPY ASSOCIATION NEWSLETTER 1

SANDTA

SOUTH AFRICAN

NEURODEVELOPMENTAL THERAPY ASSOCIATION

CONTENTS

FROM NEC

Annual Report – Shelley Broughton .……………… 2

SANDTA Application Form ……...……………….. 4

Branch report – Sonia Swart ………………………. 5

Report on W. Cape CP conference

– Dr. F van Bever-Donker ………................ 6

Raising Anthony – Tony & Cath Ford ………………. 9

Being Me – Anthony Ford- Shubrook ………..…….. 10

Parental Involvement in Therapy Progammes

– How realistic is this…- Gillian Saloojee….. 12

Activities to Improve Sensory Integration

– Sonia Swart……………………..………… 16

From the WWW……………………………...……….. 17

COURSES…………………..………………………... 18

Course Application form……………………………… 20

Branch Activities…………………………..…………. 21

Job Add………………………………….……………. 22

Equipment………………………………..…………… 23

Malamulele Onward – Gillian Saloojee……….…… 27

Branch Information…………………………………… 28

Newsletter November 2006

076 374 6739

THE NEC Chairperson: Shelley Broughton (031) 7081785 (W) (031) 7081789 (F) [email protected] Vice Chairperson: Faatima Ebrahim-Abbas 021 7978239 (W) 082 3626045 [email protected] Treasurer: Sonja Berry 031 9041593 082 297 1519 [email protected] Newsletter: Eunice König 082 927 7776 [email protected] Professional & Public Relations Committee: Vijaya Francis 082 859 2089 [email protected] Acting Secretary: Nina Strydom (031) 2041300 x 361 (W) (031) 5661281 (H)A 084 5661281 [email protected] Adult NDT Liaison: Nina Strydom (See above) Education: Corneli Strydom 082 950 4289 [email protected] Branch Liaison Sonia Swart 082 332 8943 [email protected]

SANDTA CONTACT DETAILS Address: P.O. Box 39976 Queensburgh 4070

Wiseman Makhatini Tel: 031 7081789 Cell: 076 374 6739 email: [email protected]


SANDTA AGM SANDTA AGM SANDTA AGM SANDTA AGM ---- SEPTEMBER 2006 SEPTEMBER 2006 SEPTEMBER 2006 SEPTEMBER 2006 The SANDTA AGM was held on the 16th of September 2006 at Egoli Conference Centre in JHB. The day programme was started with an exciting workshop presented by Rina van der Walt and Estelle Brown, entitled “Giving them Voice”: A multidisciplinary approach to problems of voicing in children with CP. Thank you to both Senior SANDTA Instructors for giving of their time and expertise in presenting this very in-depth and informative workshop. The programme ended with a presentation by Mary Riley (Bobath, IBITHA Instructor) entitled “Neuroplasticity”: Feedback from the III Step Conference in Salt Lake City. We would like to thank Mary for giving us input from the adult perspective, and keeping us current. We also thank Sonia Swart for organising the venue and catering very efficiently. SANDTA started the previous year with a new and excited NEC. We realized that we were a small group, but we decided that consolidating our efforts and redefining roles may be a way to guide SANDTA into a “new tomorrow”. This meant that each of the committee members not only had to master the tasks of their own portfolio on the committee, but also undertook additional duties. Each committee member has worked hard to achieve our aims for the year and I would like to express my very sincere thanks to Nadia, Vijaya, Sonja, Sonia, Eunice, Nina and Corneli for their dedication, enthusiasm, commitment and willingness to serve on this committee. During this year we have also experimented with running a nation wide NEC, which we are proud to report appears to have been very successful. In general the NEC’s aims for the previous year were: - � To establish the SANDTA Database: This has been captured with the information available

to us. We would like to improve the database by updating information about members work conditions and NDT qualifications. Please would members assist us by filling in registration forms as accurately as possible and making sure you update information when your situation changes.

� To produce and distribute membership cards: these have proved to be very costly and we have since taken a decision to discontinue this policy.

� To establish the duties of the Administration Officer: This has been running efficiently for most of the year baring a few initial communication and technical problems. Wiseman deals with calls and text messages on a daily basis.

� To support struggling branches and to establish new branches in under represented areas. To this end, WP has been identified as a branch “in need of help”. The NEC will be taking steps to re-establish WP branch during the later part of this year. We are very excited to announce the establishment of a new branch in the Eastern Cape. Sonia Swart has made contact with all of the branches and started establishing networks of contacts. She has worked hard on guidelines for running a branch, which will be made available to branches in the near future. The guidelines include general administration of branch activities, the required and recommended committee structures, constitutional issues and SANDTA’s expectations of the Branches.

� To further establish the role of the P&PR Committee to include: - Newsletter: electronic, there are still relatively few therapists who have agreed to

electronic distribution. We are hoping to increase these numbers this year. Thanks to Eunice König’s dedication and determination we have produced 4 issues of the newsletter during the previous year.

- Website: this has been delayed to the extent that it is still not up and running. The basics have been compiled and should be accessible to all members by the end of October.

- The SANDTA email has been a valuable form of communication between NEC and the members.


- Resource Library: the Resource Library has been organised and is ready to start operation. The available materials will be advertised through the newsletter and the website. We are currently investigating the addition of new materials. If any members are willing to donate material please contact the P&PR Chairperson. Materials will subsequently be subject to a review process to determine the appropriateness of each item.

� To review specific SANDTA financial policies: - Loans and Grants have been discontinued in order to facilitate changes in SANDTA. The

money will be used in part to establish the resource library. � To support community outreach programmes: At the initiation of Gillian Saloojee a number

of our members were involved in the Malamulele outreach. SANDTA has been included in the Projects Company in that a member of NEC is required to be a Director. This project is considered part of our efforts to develop outreach opportunities for SANDTA.

Future Plans In the forthcoming year, the current NEC, if elected will undertake to refine and complete our aims and objectives of 2006. We would like to expand our website and increase our exposure to the public. We would like to concentrate our efforts on re-establishing a number of branches who appear to be struggling; W-Cape and KZN. The Branch manual should be completed and ready for issue. Future projects have been discussed and the provisional planning for the next Congress in 2008 is being planned. South Gauteng has accepted the responsibility of planning and co-ordinating this project. Sadly in the coming year we will be saying farewell to one of our founder members, as Sheena Irwin Carruthers will be retiring. Plans are currently in motion to acknowledge her very valuable contributions to SANDTA. SANDTA CHAIRPERSON (2006)

SHELLEY BROUGHTON

Annual subs due: R150

New members pay

registration fee of R 30.

This notice is a bit late but

the change had to passed at

the AGM.

Thank you to Members who

have already paid.

Accounts are now being sent.

Please feel free to contact

Sonja or Wiseman if you

have any queries about your

account.

FINANCIAL

STATEMENT

Due to a delay in the audit

of SANDTA’s accounts,

the financial statement

will be sent out

separately

Wishing

all SANDTA members

a Happy and Peaceful

end to 2006

and

an Inspired 2007


MEMBERSHIP APPLICATION FORM

2006/2007

TITLE: ……… NAME: …………….………………………………… MAIDEN NAME: …………….

CONTACT DETAILS

POSTAL ADDRESS: RESIDENTIAL ADDRESS:

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CODE ………………………………………….. CODE ..……………. …………………………

PLACE OF WORK: TEL: Home: .………………………………...

…………………………………………………... Work: ..………...……………….....…..

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CODE …………………………………………… EMAIL: …………..………………………...….

Can you receive the newsletter and other correspondence electronically? Yes � No � ARE YOU? OVER 60 YEARS: � A STUDENT: �

PROFESSIONAL QUALIFICATIONS PROFESSION: ……………..……………………. HPCSA Reg. number (NB): …………………

TERTIARY INSTITUTION: …………………….…………………………… YEAR: …………………

NDT COURSES ATTENDED CO-ORDINATOR/INSTRUCTOR DATE NONE SO FAR BASIC PAEDIATRIC ADULT HEMIPLEGIC REFRESHER ADVANCED (give topic) OTHER (give topic) WHAT ARE YOUR NDT EXPERIENCE / SPECIAL INTERESTS?

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SIGNED: ……………………………………………. DATE: …………………

Post/fax to SANDTA c/o Wiseman Makhathini SANDTA Account details P O Box 39976, QUEENSBURGH, 4070 Account Holder: SANDTA Fax: 031 708 1789 Standard Bank (Westville Branch 045426) Cell: 076 374 6739 Account number: 053 103 130

JOINING FEE: R30 SUBSCRIPTION FEE 2006/2007: R150

Please ensure that payment references accompany this form.

SANDTA

SOUTH AFRICAN



BRANCH REPORT - 2006

Northern Gauteng

The Northern Gauteng Branch has been quiet this year.

• Workshop on Medication and CP was presented in October 2006 at New Hope School.

Southern Gauteng

The Southern Gauteng Branch are actively planning and hosting events. Activities for 2006 included:-

• An Evening workshop by Jean Pierre Maes in April 2006.

• Pam Hansford presented two 3 day courses in July 2006 focusing on the treatment of minimally affected children.

• A talk on Post Natal depression in September 2006. Kwa-Zulu-Natal

Kwa-Zulu Natal e-mailed a copy of the minutes of a meeting held on 4 May 2006. Activities for 2006 included:-

• Midlands Forum presented indicators for surgery in CP by Dr. Thompson in April 2006.

• Pam Hansford Course arranged at Brown’s School in May 2006.

• Midlands Workshops arranged in August 2006

FS Bloemfontein

FS Bloemfontein faxed the minutes of a meeting held on 21 February 2006. This branch meets once a month to discuss a topic.

• Feb – Review on ASIA and SANDTA meeting

• Mch – Cross cultural assessment in neuron-psychology

• Apr – Mobility and seating

• May – SAISI – Sensory Profile

• June – Hand function in neurological patients

• July – SANDTA meeting & Guillain Barre

• Aug – Dysphasia

• Sept – Emotional Intelligence in the management of neurological impaired patients

• Oct – Restoring quality of life & SANDTA meeting FS Goudveld

FS Goudveld reports that they have regular meetings.

• Lots of discussion of case studies

• CP child and feet difficulties by E Brown and Gacik in Welkom on 15 Sept 06

• Want to plan a workshop for the CP child and visual difficulties. Eastern Cape

The Eastern Cape branch meets every 3rd Wednesday of the month at the Aurora Special Care centre in PE from 17h00 to 18h00. Activities for 2006 have included:-

• A 2 hour workshop on the low toned child by R Dipenaar (PT) in May 2006.

• Assessment and treatment of babies using the NDT approach by S Viljoen in Aug 2006.

• 1day workshop on Adult Hemiplegia by Elsje Scheffler in Sept 2006.

• Introductory Course by Estelle Brown in Nov 2006 (Thank you to Clare Hubbard for her update to NEC on local SANDTA activities (14/8/06))

Western Cape

The Western Cape branch is experiencing some challenges


General Branches are following their own criteria, e.g. what works best for the members that are currently in the branch. Some branches have complained that they do not get information regarding courses and/or events early enough. There have been requests for more articles to learn from in the newsletter. There has not yet been a consistent feedback from the branches to the NEC, which makes it difficult to coordinate and plan events.

Sonia Swart Branch Liaison September 2006

Cerebral Palsy Conference 2006 Cerebral Palsy Conference 2006 Cerebral Palsy Conference 2006 Cerebral Palsy Conference 2006

Cape Town Cape Town Cape Town Cape Town From the 15th to the 17th of May we were privileged to host the Cerebral Palsy Conference 2006 in Cape Town. It was held at the Table Bay Hotel, a very luxurious environment, but one that did not distract us from our reason for meeting: the ongoing management of children and adults with Cerebral Palsy. Dr Colleen Adnams kicked off with a very enlightening presentation on modern trends in the medical management, and the “new” definition of CP, which now incorporates all the associated problems we see. Rina van der Walt spoke about the importance of early intervention with regards to communication, feeding and swallowing in the premature infant and Diana Novotny presented a paper on the management of persistent feeding disorders in children with severe CP. There was, furthermore, a big emphasis on skills training, the establishment of disability-friendly FET Colleges (the old senior secondary school, ie grades 10, 11 and 12, now mostly separate from our established schools), and the importance of job coaching. As usual, the emphasis of the conference was on education and related challenges faced by the schools to include children with all disabilities – whether they are so-called special schools or mainstream schools. Although it is understandable that they want to get away from the medical model, CP is nevertheless a medical condition. From the presentations given by Dr Rasool (Premier of the Western Cape) and the minister of Education of the province Cameron Dugmore it seems clear that they have little understanding of the special needs of people with CP in general, and in a school environment in particular. During the Conference resolutions a few very pertinent questions and comments were raised which illustrate this. A few of these were:

• With an increased referral of children with learning disabilities to the special schools, the number of therapists is negatively affected. However, the therapists are still expected to treat disabled children that are attending a main-stream school. This is irreconcilable.

• In view of more children with scholastic quotients between 55 and 70 being referred to the Training Centres, adding thousands of children to this group, why are teachers retrenched and why are more Training Centres not being opened?

• The Department of Education’s definition of CP and Intellectual Disability are, at best, ludicrous.

• The position of the nursing sister in the special school is threatened, without acknowledging that 30% of children with Cerebral Palsy have Epilepsy and that with the tendency of all-inclusive education there are many more problems an educational model cannot cope with – like 3-hourly catheterisations.


Despite this, it was not all negative. There were suggestions of further communication with the powers that be, and this is being pursued. There are, in addition, many other problems facing us, and I believe that every organisation – whether professional, governmental or non-governmental – involved in the management of children with CP needs to become more vocal. We need to communicate with one another and expose areas of weakness. The first problem that comes to mind is the trouble; some might even say obstruction, that we are experiencing with the Orthopaedic Workshop. We are unable to get the appliances required for the optimal management of our clients. It has even been suggested by the Workshop that we should give a child B-K Irons and boots instead of hinged AFOs! And then there is the issue with our CP children in mainstream schools: how are we managing these children with the few resources we do have? This is a problem, but it is therefore also a challenge. Can we come up with a model that gives us the freedom to give intensive treatment when necessary, without compromising the rest of our clients?

Certainly, there are still problems, but I prefer to see them as challenges. We should not concentrate on solving the basic problem (but at also not stopping that fight), but we must find alternative solutions to these issues. Lateral thinking is the buzzword, and that is exciting!

Dr. Fieke van Bever- Donker

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SANDTA GOES INTERNATIONALSANDTA GOES INTERNATIONALSANDTA GOES INTERNATIONALSANDTA GOES INTERNATIONAL

This year, two Introductory Courses, one in Riyadh, Saudi Arabia and one in Kigali, Rwanda, were presented under the auspices of SANDTA. Both courses were run by Gillian Saloojee, Senior SANDTA Co-ordinator Instructor. The “Introduction to the Assessment and Treatment of children with Cerebral Palsy” is a new five day course recognized and certificated by SANDTA. It can only be taught by SANDTA Instructors or Co-ordinator Instructors and although there is a set timetable and content, it is flexible enough to respond to the needs of participants on the course. Several of these courses have already been successfully run in South Africa. The course in Riyadh was organized by the paediatric physiotherapy team at King Fahad Medical City and the course in Kigali was made possible through Malamulele Onward. One could not have experienced a greater contrast in countries – from the extremely well-resourced physiotherapy department at King Fahad Medical City (KFMC) to the Inkuru Nziza community-based rehabilitation centre in an extremely poorly-resourced setting. Yet what both settings had in common were therapists eager to learn how to treat children with CP more effectively (I am afraid passive movements were the norm), their amazement that all children with CP have the potential for change with therapy, and the absence of occupational therapists and speech therapists. Therapists in both countries had heard of Bobath/NDT but this was the first time that a paediatric Bobath/NDT tutor had run a course in their country. Both countries involved working in a foreign culture and where English was the second (or third for many of the Rwandans) language. Differences in culture were most obvious in Riyadh were all women have to be fully covered and the separation of men and women is very obvious. However, in a classroom situation, where there were no males present, the women were free to remove their abhayas and the room was transformed. You realized that here was a group of young and enthusiastic physiotherapists, no different from colleagues at home.


The organizing team at KFMC were extremely efficient and a delight to work with. The course was extremely well organized and advertised. Large colourful posters and banners advertising the course were put up around the hospital (inside and outside the hospital gates) and the therapists clearly took a lot of pride in their work and in hosting and organizing the first paediatric Bobath / NDT course in Saudi. The first morning session was open to everybody – there was a formal opening ceremony in a large and plush lecture theatre, attended by over 100 people. This provided a great opportunity to tell people about Bobath/NDT and what therapy can offer children with CP. The Saudis were extremely kind, courteous and very generous hosts. The therapists were keen and motivated to learn. With easy access to the Internet and international journals, they were well informed. However, most of what they had learned about paediatric therapy was very theoretical and they appreciated seeing and learning clinical handling skills. In contrast, physiotherapists on the course in Rwanda were predominantly male, with little or no experience of playing and communicating with children, other then doing passive movements. Access to information is difficult and textbooks and journals are a luxury. Therapists are very poorly paid and internet access is usually only possible at an Internet café. Electricity and running water cannot be taken for granted. When working in Rwanda, the country’s recent history cannot be ignored and one is constantly reminded of the unimaginable atrocities that occurred during the genocide by the numerous genocide memorials scattered throughout the country. Rwanda is a beautiful but exceptionally poor country and against this background of poverty and the past unspeakable violence, it is not surprising that attitudes to children with cerebral palsy are rather negative. Sometimes, one feels that the children seem to be regarded as less than human, and that spending any time or money on them is not warranted. This is an attitude encountered by the therapists and as the therapists themselves rarely see change or improvement in the children they work with (well, I am not sure that with passive movements, much change is possible), it can be expected that they are not all terribly excited by working with children with CP. Thus, although teaching the course was difficult with English not being the first or second language for many of the course participants and also really having to demonstrate that change was possible, it was extremely rewarding. Therapists were ready to learn and willing to change old habits. They learnt to play with the children rather than just shake a rattle in the child’s face and through the daily clinical practical sessions, they saw for themselves that each child has the potential for change. They learnt how to make the children more active and were disappointed when the week was over – they wanted more. It is hoped that the seeds planted by SANDTA beyond our borders will grow and that follow-up visits to both countries will be possible, hopefully by an extended SANDTA team. We also look forward to welcoming therapists from Saudi Arabia and from Rwanda onto the next basic paediatric course here in South Africa.

What are your needs as SANDTA member for courses?

Approach SANDTA NEC/Education Committee or your

local branch

Make your needs known!


Raising Anthony

Tony and Cath Ford We are the parents of lovely Anthony, who has written another article in the newsletter. We want to tell you about raising a disabled child in the UK. Anthony was born in 1986 with athetoid cerebral palsy. We were told he had cerebral palsy at 10 months. The hospital were negative in telling us the news and left us in utter despair, more interested in having medical students come and view our child. After our initial shock we were referred to a hospital therapist who was Bobath trained. Her warm attitude to us and Anthony, treating him as a real human being, changed our utter despair to real hope. She immediately made us feel that there was a real future for Anthony and referred us to Jenny Bryce at the Bobath Centre. Having met Jenny, a wonderful all embracing human being, we couldn’t wait to go to the Bobath Centre. Anthony was seen by speech, occupational and physiotherapists. All were warm and positive which was just what we needed as parents who had received such devastating news. We were taught how to provide therapy at home which we did every day. I (Cath) gave up my job as a teacher to work with Anthony and to make sure he had a childhood as well as therapy. Right from the beginning we were determined that Anthony would always be in mainstream. Anthony went to an ordinary playgroup, nursery and primary school near our house. This meant, children and very importantly, parents accepted him as he was and were not afraid of him, so he got invited to children’s homes and parties. Anthony was the first disabled child in our community to go to mainstream school and parents said that knowing him made them realise that he was an ordinary little boy who wanted the same as their children. Because he went to a mainstream he helped other people to overcome their fear of disability. Separation of disabled people into special schools or institutions is a kind of apartheid which makes people very afraid of anyone who is different. Anthony’s primary school was an old multi-story building which was not accessible. A new Head Teacher wanted Anthony to leave the school because she would not transfer his class to the ground floor. We refused and fought for the installation of a lift. Because a lift was installed the school is fully accessible and subsequently many other disabled children have gone to the school. The local high School was not accessible and we did not have the energy to fight another battle so we left the house where we had lived for 20 years and moved to an area where there was an accessible High School. At sixteen Anthony had to transfer from High School to study A Levels at a college. The local college refused to accept him and Anthony had to fight a court battle to get accepted. He won the battle, creating legal history under the new disability rights law, and passed exams to go to university. He is at London University and extremely happy. He is totally accepted by the university staff and other students. The university has gone out of its way to meet Anthony’s needs. He never stops talking about being accepted as an ordinary person and the friends he has at university. Parents who have a disabled child unfortunately have to fight long hard battles and need the

support of professionals. Bobath therapists have given enormous support and encouragement to


Anthony and us. Some have remained good friends. The result is Anthony, a happy, capable

and confident young man who is achieving what he wants in life.

Apart from fighting for decent education the main problems we had when Anthony was young was having too many people! When Anthony was about 6 years old we counted all the ‘professionals’ we dealt with – 22 people! This is not holistic – 22 people all in separate niches, no one looking at the complete picture. Also there was a lack of older role models – parents of non-disabled children have clear ideas about what their children can become, but parents of disabled children have no role models to show them what their children can achieve. So we would encourage therapists to think about the whole person. When you look at the 2-year-old child, see the potential teenager and the adult. Remember that the parents of a disabled child usually start out scared and ignorant. You can help parents to find the help they need, but sometimes that means stepping back from just ‘doing therapy’.

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BEING ME Anthony Ford-Shubrook

If you have seen the “Bobath videos” on classification, you may recall a cute young blond boy with athetosis. That was Anthony Ford-Shubrook. He is now 20 years old, and a second year student at London University. Anthony, together with his parents Tony and Cath, recently visited South Africa for a holiday and for research for his Geography degree. Whilst in South Africa, Anthony and his parents gave a marvellous and insightful talk to participants on the 8 week basic course in Johannesburg. Anthony was asked to reflect on his years and years of therapy and what he would like to tell therapists. He was very honest!! Anthony and his parents kindly wrote up their presentations for the newsletter. Introduction My name is Anthony Ford-Shubrook. I have athetoid cerebral palsy and use a wheelchair. I was born with cerebral palsy and was very lucky in being able to attend the Bobath Centre in London every week from the age of 11 months until I was about 12 years old. I still periodically attend therapy there – usually if there is a particular problem I need help with. What technology and equipment has helped you most? My computer – I have a keyguard and a trackball; the molift and my wheelchairs. The molift enables me to do transfers almost independently and without being lifted as I am able to stand and hold onto it with both hands. I have three wheelchairs – a power chair for outdoors and field trips; a powerchair for indoors and campus and a manual chair for less accessible places. I also have a portaramp, which I use to get in and out of vehicles. How did therapy help you? The Bobath therapists helped me to make the most of my physical abilities because it helped me to develop properly, especially when I was young. Therapy has helped me to make the most of what I can do. It has also helped me understand my limitations. How do you feel about years of therapy? Therapy is often boring! I mean, how many things can you do in a standing frame? Therapy was also uncomfortable and sometimes painful. I found it a barrier to making friends and it also took up a lot of time – I wanted to get on with my life. Therapy is just part of what makes me who I am.


My Mum and Dad and teenagers from a local High School helped me to practise the therapy at home, trying to make it fun and interesting. One of the things I had to do was to practice sitting on a bench, for my balance. My friends would come over and read me stories. As I got older it was more and more important that therapists understood what I wanted to achieve and provided therapy accordingly. What would you like to tell therapists? To think of the whole person. Also to think creatively and make therapy meet my needs. Whilst at school I wanted therapy to support me in my studies for example, I wanted speech therapy to help me in the classroom with French and German, and occupational therapy to help me with doing Art and Graphic Design. For me therapy was a means to and end. I did not want to be taken out of lessons for therapy – it had to fit in with my life. For me, therapy is a means to an end. In Britain many disabled children are included in mainstream schools and some go to special schools. I went to mainstream schools from age 5 through to university. Some teachers accepted that I was bright but others had little or no expectations of me because I was disabled. How has therapy helped you? Therapy has contributed to making me a whole person. It has helped me to access a full life in education, employment and friendships. The single most important thing a therapist can do is to ask me what I want to achieve – I want the therapist to react to what I want. Once the therapist knows what I want then they can be proactive, they have a much wider knowledge and experience than me. What are some of your main frustrations? It might sound as if life in the UK for a disabled person is relatively good and problem free, but it isn’t. Friendships are a problem because of lack of access to houses. People make assumptions about what I can and can’t do, and there are still fears and misunderstandings about someone who is ‘different’. Access is still a big problem. In London all 8,200 buses are fully accessible with ramps, but there is a lack of access to the Underground system and trains. Airlines and wheelchairs don’t go together very well – they are always breaking my chairs! Tell us about your life right now. Now I live in a flat on campus which I share with four other students who are not disabled. I employ students as assistants to help with my personal care and note taking. I get grants from the Government to pay for this assistance. This is fantastic because I am living an ordinary life with students at my university, disabled and non-disabled. I am having a great time. My parents remind me that I am there to work as well! My geography studies involve politics, economics and culture and I am going to specialise in developing countries. This summer I researched in South Africa preparing for my third year dissertation which will be about what disabled young people are entitled to and what they actually get. This involved looking at the South African Constitution, meeting with professional people and most importantly with parents and disabled young people. I visited Johannesburg, Soweto and Orange Farm looking at education, transport, health, employment and housing. Having met children and teenagers with cerebral palsy I realised that I have been very fortunate in having the expertise of Bobath therapists to support me in my physical development. Many of the children I met in South Africa would not have the physical problems they have now if they had access to regular therapy.


The things I got and these young people do not get are fundamental to making the most of your life as a disabled person. If you don’t get therapy you don’t develop as well as you might physically. You need transport to get you to school, but the current “informal” taxis are not accessible and charge extra for wheelchairs. Further, the new design of 25 seat minibus intended to replace these taxis will not be accessible. Schools are supposed to admit disabled children, and the official education policy is for inclusion, but in practice many mainstream schools do not admit disabled children. Housing should be designed to be accessible but most houses being built now are inaccessible and will need expensive adaptation. There is currently a target for all employers to have 2% disabled staff, but at present the numbers are much lower. Disabled people in South Africa need support in their fight to get what they are entitled to under the South African Constitution.

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PARENTAL INVOLVEMENT IN THERAPY PROGRAMMES –

HOW REALISTIC IS THIS IN POORLY-RESOURCED

SETTINGS?

Gillian Saloojee (B.Sc(Physio), M.Sc (Med))

Senior SANDTA Co-ordinator Instructor

Parental participation in Bobath / NDT therapy programmes together with teaching handling skills to parents and carers to ensure carry-over into the home environment is one of the pillars of Bobath / NDT (Mayston, 2001) Whilst intuitively parental involvement is essential to the rehabilitation progress, rarely do Bobath / NDT therapists take the time to consider what impact this involvement has on the parents and carers themselves. This article examines the relevant literature regarding parental involvement in therapy programmes with a special emphasis on studies conducted in developing countries. It concludes with some suggestions on how parental participation in poorly-resourced areas could be enhanced. The role of parents in therapy programmes for children with disabilities has long been debated and discussed (Bazyk, 1989; Hinojosa and Anderson, 1991; Sloper and Turner, 1992; Law et al., 1993; Jansen et al., 2003). The emphasis in much of the research has been on the effects of parental participation on child functioning. Although it is generally acknowledged that parental participation has a positive effect on child-related outcomes, the effect of parental participation on parents themselves has received relatively little attention (Jansen et al., 2003). Parental involvement in therapy programmes may also have negative consequences in that it may impose an additional stress factor for parents who already have to deal with the difficulties of raising a child with a disability (Sloper and Turner, 1992; Crowe, 1993; Crowe et al, 1997; McConachie et al., 2001; Jansen et al., 2003; Rosenbaum, 2004;). The services themselves may impose extra demands on the family by expecting parents to concentrate on the child with the disability to the exclusion of other problems (Sloper and Turner, 1992; Crowe, 1993). There are few studies from developing countries which have either formally examined the role of parents in therapy intervention programs or attempted to establish parents’ needs and expectations of a therapy service and its outcome. In reviewing these studies, it is often difficult to separate out the issue of parental involvement and stress in caring for a child with a disability from that of parental involvement in a therapy programme.


Are Western models of parental involvement appropriate in disadvantaged settings? O’Toole (1989), in his evaluation of the appropriateness of applying Western models of care to a Guyanese sample, poses a pertinent question: “Is parental involvement a practical proposition in a developing country?” (p. 330). He suggests that overwork, poverty, severe social tensions and sheer exhaustion can make parental involvement a demanding proposition. This view is supported by McConkey (1995) who warns that early intervention schemes in developing countries are more often constrained by what is possible for families to cope with than the possibilities envisaged by service workers. In a study on the appropriateness of Western models of parental involvement in Calcutta, Goldbart and Mukherjee (1999a) point out that whilst in developed countries parent involvement is partly driven by the principle that intervention which includes partnership with parents optimises outcomes, in India and other less-developed countries parental involvement is often needs-driven. This is mainly the result of limited availability of teachers and therapists experienced in working with children with special needs. Goldbart and Mukherjee (1999b) also stress that issues such as family constellation (i.e., nuclear, extended and joint family structures), traditional hierarchies within families, and women’s roles and responsibilities may necessitate specific adjustments to the delivery of intervention programmes. Parental needs and expectations Anderson and Venter (1997) explored parental experiences and expectations of a cerebral palsy clinic in a poor urban community in Soweto, South Africa. Interviews conducted with 55 parents of children with cerebral palsy revealed that the majority of parents’ expectations were for a “normal” child and the hope that therapy would help their children to “become like other children.” Almost all the children in this study were under the age of five years with over half being under the age of three years, which may have explained the parents’ unrealistic expectations for a normal outcome. An unexpected finding of this study was that 84% of parents said they would still continue to attend the clinic even if they thought that therapy was not beneficial. The authors interpreted this finding as an indication of the paucity of community-based services and resources offering appropriate support to families of children with disabilities and the important subsidiary role the clinic played in providing emotional help and support to parents. Another interesting finding from this study was that over 50% of the parents wanted more “hands on” therapy for their children, a finding similar to Jelsma and Zhanje’s study (1999) in Harare, Zimbabwe. In a study conducted in Lesotho, McConkey and Mphole (2000) held a series of consultation sessions with six groups of mothers of children with intellectual impairments”. A total of 68 parents and friends attended the sessions, the aims of which were to determine the priorities caregivers had for themselves and for their children, and their views on how this might best be achieved. The dominant themes emerging from this process were that mothers wanted their children to become independent in daily living activities, have a chance of employment and attend school. The wishes parents expressed for themselves were mainly for the protection of the child’s rights and to have training in looking after their children. A survey of 47 caregivers of children with intellectual impairments in Botswana revealed that the caregivers’ main expressed needs were for financial, transport, health and educational support (Brodin and Molosiwa, 2000). Few caregivers mentioned the need for rehabilitation; this was most likely because this kind of support had never been available and so caregivers were unaware that therapy might have been necessary or useful. An in-depth qualitative study involving 52 caregivers of children with disabilities was conducted recently in Uganda (Hartley et al., 2005). This is the only published paper from Africa which provides a deeper understanding of how families cope with disabled children in their own


communities. Data from this study suggested that although most families were coping, the main challenges they faced were the burden of care for the child; poverty (resulting in lack of money for basic items such as food and clothing as well as for transport and treatment); the impact of the child’s disability on the carer in the form of stress; and difficulties in communicating with the child. Adequate knowledge, information and skills that would assist caregivers in caring for their own children and thus reducing their own stress levels were the main needs identified by the caregivers. Comments from the carers suggested that the children’s three main needs were physical, the need for assistive devices such as wheelchairs and hearing aids, and the need for company. In keeping with the findings of Anderson and Venter (1997), McConkey and Mphole (2000), and Brodin and Molosiwa (2000), access to education for their children was also an important priority for caregivers. Implications for therapists Parental participation in therapy programmes is an essential component of any Bobath/NDT based intervention but in poorly-resourced areas it is important to recognise that many families are barely coping under the strain of lack of material resources and environmental hardships. This reality is seldom recognised by therapists. Imposing additional responsibilities on a caregiver in terms of carrying out therapy programmes at home may simply increase his or her stress levels and burden of care. In disadvantaged settings, greater parent participation in therapy programmes is driven by a lack of trained therapists – thus, paradoxically, the most vulnerable caregivers in need of the greatest amount of support are often given the most responsibility for caring for their child. As O’Toole (1989) suggests, our goal is not to add one more demand on already overburdened parents, but to enhance the quality of interaction between caregivers and children in the time which is available. As Bobath/NDT therapists, it is important for us to take into account cultural and environmental factors such as poverty and styles of parenting as well as the needs and expectations of caregivers. In poorly-resourced areas, these needs and expectations often extend far beyond just the need for “hands on“ therapy. For parental participation in therapy to be effective and appropriate in poor communities, therapists need to understand the broader context in which therapy is taking place and to address the underlying issues which really concern families and caregivers. Adopting a stronger family-centred approach; the provision of equipment and assistive devices; facilitating parent support groups and networks; finding innovative ways of enhancing caregivers’ understanding of cerebral palsy and therapy and their interaction with their child; involving fathers and close family members in the rehabilitation process; and helping caregivers access social grants and schools are some ways in which therapists can begin to create a climate which facilitates greater and more relevant parental participation.

REFERENCES

Anderson GM, Venter A 1997 Parental experiences of a cerebral palsy clinic in a poor urbanizing area. South African Journal of Physiotherapy 53(3): 4 - 7

Bazyk S 1989 Changes in attitudes and beliefs regarding parent participation and home programs: an update. American Journal of Occupational Therapy 43: 723 – 728

Brodin J and Molosiwa S 2000 Support for families with children with mental retardation in Botswana, Southern Africa International Journal of Rehabilitation Research 23: 163 – 167

Crowe TK, VanLeit B, Berghmans KK, Mann P 1997 Role perceptions of mothers with young children: the impact of a child’s disability. American Journal of Occupational Therapy 51(8): 651 - 661


Crowe TK 1993 Time use of mothers with young children: the impact of a child’s disability. Developmental Medicine and Child Neurology 35: 621 - 630 Goldbart J and Mukherjee S 1999a The appropriateness of Western models of parent involvement in Calcutta, India. Part 1: parents’ view on teaching and child development. Child: Care, Health and Development 25(5): 335 - 347 Goldbart J and Mukherjee S 1999b The appropriateness of Western models of parent involvement in Calcutta, India. Part 2: implications of family roles and responsibilities. Child: Care, Health and Development 25(5): 348 – 358 Hartley S, Ojwang P, Baguwemu A, Ddamulira M, Chavuta A 2005 How do carers of disabled children cope? The Ugandan perspective. Child: Care, Health and Development 31(2): 167 - 180 Hinojosa J, Anderson J 1991 Mothers’ perceptions of home treatment programs for their preschool children with cerebral palsy. American Journal of Occupational Therapy 45: 273 – 279 Jansen LMC, Ketelaar M, Vermeer A 2003 Parental experience of participation in physical therapy for children with physical disabilities. Developmental Medicine and Child Neurology 45: 58 – 69 Jelsma J and Zhanje 1999 Impact of the Harare parents’ groups for children with a disability and their parents: are caregivers satisfied with the service. In Leavitt R, editor. Cross-cultural rehabilitation. An international perspective. London. W.B. Saunders Jelsma J and Zhanje 1999 Impact of the Harare parents’ groups for children with a disability and their parents: are caregivers satisfied with the service. In Leavitt R, editor. Cross-cultural rehabilitation. An international perspective. London. W.B. Saunders Law M and King G 1993 Parent compliance with therapeutic interventions for children with cerebral palsy. Developmental Medicine and Child Neurology 33: 379 – 387 Mayston MJ 2001 The Bobath Concept today. Synapse, Spring: 32 – 34 McConachie H, Huq S, Munir S, Kamrunnahar, Akhter N, Ferdous S, Khan NZ 2001 Difficulties for mothers in using early intervention services for children with cerebral palsy in Bangladesh. Child: Care, Health and Development 27(1): 1 - 12 McConkey R, Mariga L, Braadland N, Mphole P 2000 Parents as trainers about disability in low income countries. International Journal of Disability, Development and Education 47(3): 309 - 317 McConkey R 1995 Early intervention in developing countries. In Zinkin P and McConachie H, editors. Disabled children and developing countries. Clinics in Developmental Medicine no. 136. London: MacKeith Press. O’Toole B 1989 The relevance of parental involvement programmes in developing countries. Child: Care, Health and Development 15: 329 - 342 Rosenbaum P 2004 Families and service providers: forging effective connections and why it matters. In: Scrutton D, Damiano D, Mayston M, editors. Management of the Motor Disorders of Children with Cerebral Palsy. Second edition. London: MacKeith Press, p 22 – 31 Sloper P and Turner S 1992 Service needs of families of children with severe physical disability. Child: Care, Health and Development 18: 250-282


Activities to improve sensory integration

ACTIVITY What you will need: What your child can do Benefits Pokin’O’s (6 years+)

• Marker

• Toothpick / pen

• newspaper

• Using the marker colour all the O’s in a newspaper paragraph or page

• Poke a hole through all the O’s with the toothpick or pen

Scanning the page for all the O’s improves visual discrimination. This activity improves:

• Eye-hand coordination

• Bilateral coordination

• Fine motor skills

ACTIVITY What you will need: What your child can do Benefits

Tapping Tunes (4 years+)

• Hands

• Pencil to tap

• Drum to beat

• I am going to tap a rhythm; you listen and tap the same rhythm.

Listening to tapped rhythms improves:

• auditory perception

• auditory memory and association

• speech and language skills


Roll over, roll over

• anything to roll over • Assist the child to roll sideways over the mat BE CAREFUL WITH

ROLLING A CHILD IS EASILY

OVERLOADED BY THIS INPUT

Rolling provides vestibular, kinesthetic and proprioceptive input


Crash pad • Single or double bed size duvet

• Add old cushions or foam blocks or polystyrene chips to inside

• Jump from block or plinth onto crash pad

• Assist your child to fall off ball onto crash pad

• Hold your child and fall with him onto crash pad

The jolt of landing onto the crash pad provides deep pressure to the muscles and joints, which is strong proprioceptive input.


Hide & Seek

• Different textures with objects hiding - rice box + marbles - bean box + insects - jelly + coins, etc - ball pond + veggies

• child looks with hands and/or feet inside texture for hidden objects

Playing with different textures increases:

• tactile perception

• body awareness

• creative exploration

(From Out-of-Sync Child has Fun – Carol Stock Kranowitz 2003)

S Swart (Occupational therapist) 2006


From the American Academy for Cerebral Palsy and Developmental

Medicine 10 best articles for 2004

Dodd KJ, Taylor NF, Graham HK. A randomized clinical trial of strength training in

young people with cerebral palsy. Dev Med Child Neurol. 2003 Oct; 45(10): 652-7.

This randomized clinical trial evaluated the effects of a home-based, six-week strength-

training programme on lower limb strength and physical activity of 21 young people, mean

age 13 years 1 month, with spastic diplegic cerebral palsy (CP) with independent

ambulation, with or without gait aids; (Gross Motor Function Classification System levels

I to III).

Compared with the 10 controls, the 11 participants in the strength-training programme

increased their lower limb strength (plantarflexor and knee extensor strength as

measured by a hand-held dynamometer) at 6 weeks and at a follow-up 12 weeks later. At

6 weeks, trends were also evident for improved scores in Gross Motor Function Measure

dimensions D and E for standing, running and jumping, and faster stair climbing. A

relatively short clinically feasible home-based training programme can lead to lasting

changes in the strength of key lower-limb muscles that may impact on the daily function

of young people with CP.

***************************

Henderson RC, Kairalla J, Abbas A, Stevenson RD. Predicting low bone density in

children and young adults with quadriplegic cerebral palsy. Dev Med Child Neurol.

2004 Jun; 46(6): 416-9.

Many children and young adults with cerebral palsy (CP) have diminished bone mineral

density (BMD) and a propensity to fracture with minimal trauma.

The aim of this study was to identify variables which are routinely assessed as part of

standard clinical care and that might be used to identify those individuals with CP who

are most likely to have low BMD.

One hundred and seven participants (ages 2 –21 years) & moderate to severe spastic CP

were assessed in detail. This included gathering clinical data, taking anthropometric

measures of growth and nutrition, as well as dual energy X-ray absorptiometry measures

of BMD.

Seventeen participants were ambulatory with assistance (GMFCS level III), and 90 were

capable of little or no ambulation even with assistance (26 GMFCS level IV and 64

GMFCS level V). Weight z score proved to be the best predictor of BMD z score.

Declining BMD z scores also correlated with increasing age and greater severity of

involvement.

It can be predicted, with reasonable reliability, that a 10-year-old non-ambulatory child

with quadriplegic CP and a 'typical' weight z score of -2 will have a BMD z score that is

at best -2. Prior fractures, use of anticonvulsants, and feeding difficulties further

reduce predicted BMD.


BASIC COURSES

BASIC 8 WEEK BOBATH/NDT PAEDIATRIC COURSE 2007

Dates : 12 February – 6 April 2007

Course leader : Gillian Saloojee B.Sc (Physio), M.Sc (Med), MCSP

Senior SANDTA Co-ordinator Instructor; Bobath tutor (EBTA)

Venue : Cerebral Palsy Clinic, Chris Hani Baragwanath Hospital,

Johannesburg, South Africa

Cost : R8875 / £770

20% discount for South African registered therapists

working in Africa (R7100)

Enquiries : Mary Murray (Course Administrator)

Tel : (--27) 11 917-5747 Fax : (011) 892-3893

e-mail : [email protected] Address: P. O. Box 2159, Boksburg, 1459

Send completed application form to Mary Murray

***********************

BASIC 8-WEEK PAEDIATRIC NDT COURSE

Venue: Port Elizabeth

Date: During the latter half of 2007 (dates to be confirmed in next

newsletter)

The course will be presented in 2 blocks of 4 weeks each

Course leader: Estelle Brown

Contact: Estelle Brown Tel (011) 674 5272 or 073 1482178

e-mail: [email protected]

*******************

BASIC COURSE (IBITA/ SANDTA)

THE ASSESSMENT AND TREATMENT OF ADULTS WITH

NEUROLOGICAL CONDITIONS – THE BOBATH CONCEPT

Course leader: Lynn Fearnhead (MSc Physiotherapy, BCI)

Assisted by: Megan Knox (MSc Physiotherapy)

Venue: Pretoria Academic Hospital, Physiotherapy Department

Dates: 5-23 February 2007

For further information contact: Lynn Fearnhead at 082 903 6815

Please contact course organiser

for cost where none quoted


ADVANCED LEVEL II COURSES

FACILITATION : “LESS IS MORE” There are still a few places left on this course!

COURSE LEADER : Jean-Pierre Maes, Senior Bobath tutor (London), assisted by Gillian

Saloojee, Senior NDT Co-ordinator Instructor

LENGTH : 6 days

DATE : 15 – 20 January 2007

VENUE : PLEASE NOTE CHANGE IN VENUE. Owing to insufficient response from therapists in Cape Town, the course venue has been changed to

JOHANNESBURG. (Cerebral Palsy Clinic, Chris Hani Baragwanath Hospital)

Cost: R2900

This is a very practical course with the emphasis on improving participants’ clinical handling skills. The format includes clinical practical sessions, demonstrations, practical sessions and lectures.

CLOSING DATE FOR APPLICATIONS HAS PASSED - so please submit your

applications as soon as possible.

Please contact Mary Murray if you have not had a reply to your submitted

application

For further information, contact the Course Administrator:

Mary Murray at (011) 917-5747 or by e-mail at [email protected]

**********************************

Advanced Early Assessment and Intervention with Babies

and Young Children Jean Pierre Maes and Betty Hutchon

*****************************

COURSE ON EARLY EVALUATION AND TREATMENT OF

INFANTS WITH CEREBRAL MOTOR DISTURBANCES

(BABY COURSE) Venue: Pretoria

Date: 2 weeks towards the end of February/ beginning March 2007

(to be finalized by end November, details available then from Estelle Brown)

Course leader: Estelle Brown

Contact Estelle Brown: Tel (011) 674 5272 or 073 1482178

e-mail: [email protected]


COURSE APPLICATION WHICH COURSE ARE YOU APPLYING FOR? …………………………………………………………………………………………………………… CONTACT DETAILS NAME: ……………………………………………………………………………………………………

POSTAL ADDRESS: SANDTA MEMBERSHIP NO: ……………...

……………………………………… TEL:HOME:………………………………

………………………………………… WORK: …………………………………

CODE:………………………………… FAX: …………………………………

E-MAIL: …………………………………… CELL: …………………………………

PROFESSIONAL QUALIFICATIONS PROFESSION:………………………………….. HPCSA Reg. No. (NB): …………………

TERTIARY INSTITUTION:…………………… YEAR:…………………………………….

PROFESSIONAL INDEMNITY: ………………………………………………………………

NDT COURSES ATTENDED CO-ORDINATOR/INSTRUCTOR DATE

Please give details of your current employment and relevant caseload.

NAME OF FACILITY: …………………………………………………………………………….…..…

LOCATION: ……………………………………………………………………………..……….………

RELEVANT CASELOAD: ……………………………………………………………….…..………….

RELEVANT EXPERIENCE: …………………………………………………………………………….

YOUR NAME AS YOU WANT IT PRINTED ON THE CERTIFICATE:

……………………………………………………………………………………………………

SIGNED:…………………………………… DATE: ……………………………………..

This form should be returned with proof of payment to the Course Co-ordinator as required

SANDTA

SOUTH AFRICAN



SANDTA BRANCH - EASTERN CAPE

Presenter: Estelle Brown (Physiotherapist and Senior SANDTA instructor,

Gauteng) Topic: Malamulele Outreach Project – an innovative project founded by SANDTA members.

Therapy teams went into rural Limpopo to assess and address the needs of children with Cerebral Palsy and their families.

Date: Wednesday, 22 November 2006

Venue: Cape Recife High School, Admiralty Way, Summerstrand,

Port Elizabeth, Physiotherapy Department

Time: 16h45 to 18h00 - Please arrive promptly as light refreshments will

be served.

Open session i.e. NGO staff, parents, informal carers, therapy and nursing

assistants welcome to attend – no charge.

Please RSVP for tea/coffee purposes to Clare Hubbard, OT (041) 3733780 or

082 5822008 or [email protected] by 21 November.

***********************************

SPECIAL GENERAL MEETING – WESTERN CAPE

Guest Speaker – Heather Graz (BA in Speech and Hearing Therapy (Wits) and a

Masters in Communication Pathology from the University of Pretoria.

“Pack your Trunk and Go – Managing a Child with Athetosis”

After the presentation, we will meet to elect a new committee for 2007.

Date: 7 February 2007

Time: 18h00

Venue: Bel Porto School (2 Arcadia Avenue, Lansdowne)

RSVP: Jenny Bradshaw [email protected] or 083 775 1995

************************************

KWAZULU-NATAL ANNUAL AGM

A new committee will be elected at this meeting.

Venue: Brown’s School. Date: 11 November 2006

RSVP. Gwen Reddy Tel: 033 345 4686 Cell: 083 338 3899


NORTHERN GAUTENG - AGM

A meeting was held at New Hope School on 17 October 2006 and was attended by 22

members. Dr. Izelle Smuts gave an informative talk on the medical management of CP.

We also had our AGM and a new committee was elected.

Gina Loudon will take over as Chairperson. The other members of the committee are:

Elmien van den Heever, Cathy Patterson and Corien Kruger. Good luck to the new

committee.

Contact details for Gina:

[email protected]

082 665 8385

I would like to thank my committee for all the hard work - to Reinet, Susan and Ilze –

A BIG THANK YOU!

Karien Marais

Southern Gauteng

What: Latest trends in BOTOX Who: Dr. Tiziana Aduc

Where: Sunninghill Hospital When: 21 October 2006

FS Bloemfontein What: Restoring quality of life When: 17 October 2006

FS Goldfields What: Case discussions Where: Bongani Hospital

PHYSIOTHERAPIST REQUIRED Where: Frances Vorwerg School for children with physical disabilities and learning

disorders in Johannesburg Post: Level 1 Requirements: Physiotherapist, registration with HPCSA and experience working with

children Caseload: Cerebral Palsy and a variety of other muscular conditions in a multidisciplinary

environment When: To start on the 1st January 2007

Fax CV to (011) 6833394

Please contact Doris Mbuyu, Senior Education Therapist

Tel.: 011-683-3390 or 0722281741


TWO USEFUL, EASILY MADE PIECES OF EQUIPMENT Ronnie Steinhardt

At the start of this year I started an occupational therapy department at Port Alfred Hospital; my duties include monthly visits to 9 clinics up to 55 Km. away. At the furthest one I have been seeing a 6 year old girl with very severe athetosis. She spends most of her day wriggling on her back, either at home or at a school for mentally handicapped; where she is the only physically handicapped child. She is unable to talk, but appears to understand reasonably well. Her mother has always fed her by holding her on her lap and tipping food into her mouth. At her first session, the mother was shown how to sit the child on her lap, restrain the child's legs with her legs, restrain her arms, and then use her free hand to control the child's jaw for biting and chewing. At the next session, a month later, there had been a marked improvement in the child's feeding pattern, and she was taught to drink out of a cut-away cup. The child was provided with a McClaren buggy for transport; although a wheelchair might be preferable with regard to seating posture. The buggy has advantages; it fits into the house better and folds up smaller if the mother wants to use it on public transport. An insert is being planned to enable her to use the buggy for seating at school. It will be based on the principles of the chair which is described below.

I am fortunate in having a friend, John, in Port Alfred, who is a very good handyman, and has made a lightweight chair made a lightweight chair specially for her. In this she can be correctly positioned and restrained, particularly for feeding. It will also be used to improve arm control, and the chair has 2 different size trays; 1 wider, for now, and a narrower one for when she has more arm control and can use her arms closer to her trunk. The chair has a curved back, to limit shoulder retraction and spinal extension. It has slots for straps at chest, pelvis, shin and ankle level so that the amount of restraint can be reduced at different times e.g. most restraint at feeding times, and removal of chest strap during arm activities. As her function improves, the restraint can be decreased even more. The chair is currently being adapted to include a "potty hole" (with a false solid seat on top) so that the chair can also be used for toilet training as it supplies the stability that the child will require in order to learn bladder and bowel control. This design should also prove useful for other types of cerebral palsied children. The table and chair are made of plywood and have the following dimensions: Height: 790 mm Width: 350 mm Footrest: 150 mm deep Depth: 240 mm (without footrest) Seat: 240 mm high x 240 deep Table: 450 mm wide x 400 deep

Shown without the strap slots.

Slot for hip strap just above base and close to

body to limit lateral movement.

Slots for shoulder straps slightly below line of

shoulders to exert slight downward pressure


A second piece of equipment John made was for a 3 1/2 year old boy with epilepsy and developmental delay. He is almost ready to walk but lacks some balance and confidence. The lightweight walker is easy to carry and fits into his mother's small house. The little boy tends to perseverate with hand-flapping and the most difficult part of his therapy at present is to encourage him to hold the handles for long enough to learn to walk! But slow progress is being made. The walker was constructed from UPVC 25mm pipe and fittings and is very stable. (Obtainable from plumbing supplies) Its dimensions are: Height to lower handle: 500 mm Width: 450 mm Front to back (bottom): 550 mm Front to back (top): 350 mm Upper handles adjustable upwards or can be removed totally. Front wheels are small non-swiveling castors. Rubber doorstops screwed to rear frames to act as "brakes".

These measurements would suit children from about 3 to 6 years, depending on size.

Should you have any enquiries regarding either of these items, you can contact me at:

076-299-3184, or John at [email protected]

Happiness is!

With father, when she sits

in her chair for the first

time!


Handi-Go chair For the handicapped on the go

� Works with person’s own body weight to make it very stable and safe

� No more baby sitting – gives the facilitators valuable free time

� Gives the user complete privacy

� Free of any parts that can cause injury

� Tamper proof locking system

� Can be removed in an instant to leave toilet/bath free for other users.

� Folds away completely for transport and storage.

� Light weight(2.3kg)

� Water resistant and durable

� Affordably priced at R995

Contact Pieter 0825532264 / [email protected] / 012 3615964 Tel/fax


STANDING BOX

This standing device is a height adjustable box design. The padded door pushes the pelvis into a neutral A-P alignment and the kneepad keeps the knees extended and aligned under the hips. Any lateral deviation can be corrected with extra padding. The heel bar prevents the feet from sliding backwards. The table can be either straight or tilted to enhance extension. The floor can be adjusted according to the child’s height.

BATH CHAIR PVC covered with removable toweling sleeves. Backrest can be at 90 or 45 degrees

Price: R400

Prices do not include packaging and railing

The box can be taken apart for transport.

The smallest one weighs less than 10kg.

Price

Small (1 – 3 ½ yrs): R950

Medium (3 – 8/9 yrs: R1000

Large (9- 14/15yrs: R1050

Contact: Estelle Brown

Tel: (011) 674 5272 or 073 1482178

E-mail: [email protected]


MALAMULELE ONWARD

UPDATE – OCTOBER 2006 Malamulele Onward continues to move forwards, often at a canter or gallop rather than a slow trot. As reported in the Malamulele Onward Issue 2, we are in the process of forming a Section 21 Company. The paperwork has been completed and the application has been lodged with the Registrar of Companies. This process has taken time but was a necessary step forward as it will greatly assist with fundraising. It means that Malamulele Onward will have its own constitution, treasurer, bank account and audited financial statements. The organization remains closely linked to SANDTA with the SANDTA Chairperson (or nominated representative) having a permanent seat on the board of directors. The two main activities of Malamulele Onward this year were the Introductory Course in Kigali, Rwanda (reported on elsewhere in the newsletter) and the follow up visit to Malamulele, which is where it all began. Return to Malamulele In September 2006, Andrea Fraser-Alridge and Marga Marloth joined myself and Lydia Ngwana for a two day return trip to Malamulele. The purpose of this trip was to reassess the children seen last year and to plan the logistics for the week of intensive therapy at the end of October. None of us were prepared for the turnout of children and parents. Fifty-five caregivers brought their children for assessment and screening. This compares to the 29 children who were screened in the first phase last year – so the numbers have doubled! Even the rehabilitation staff at Malamulele Hospital were shocked to see so many children – there were many children they did not know or who they had last seen several years ago. So somehow the message had got around – presumably by word of mouth from those mothers who were part of the programme last year. Of the 29 children who were seen last year, four have died. One child has moved to Johannesburg and of the remaining 24 children, 19 children returned for reassessment – this is an impressive 80% follow-up rate. Fortunately the number of NDT therapists volunteering their services has also increased – thirteen therapists will be involved in this year’s block of intensive therapy – four physios, six occupational therapists and three speech therapists. The team is expanding – we will also be joined by two orthotists – Gagic Hakopian from Johannesburg and Daniel Meyer from Port Elizabeth. In addition, two of the therapists working at Malamulele Hospital – one of the physiotherapists and an occupational therapist – have asked to be included in the team – which is great in terms of sustainability. The mid-level rehabilitation workers from Malamulele Hospital will once again be working together with us. Funding Funding for this return trip to Malamulele Onward has also been secured. Once again, the amazing team from Canada together with the International Development Relief Foundation (IDRF) have raised the necessary funds for this trip – over 30 000 Canadian dollars. This has enabled us to buy more equipment – both for the children and to leave at Malamulele Hospital and the outlying Mhinga Clinic were some of the children go for therapy. Greater Good South Africa (GGSA) has also assisted with funding and through them, Malamulele Onward was selected as a beneficiary of the Noah Broking for Good Charity Day. Malamulele Onward has also been included in the SASIX (South African Social Investment Exchange) prospectus. This will help to secure future funding. As I said, it seems at times that Malamulele Onward has broken into a gallop. It is very exciting and very rewarding to be involved in this journey. I was thrilled, and deeply touched, when at the end of the recent 2006 Basic 8 week course in Johannesburg, every one of the therapists who completed the course volunteered for the current or for future Malamulele Onward projects. So keep watching this space – in the next newsletter, we will give you feedback of this year’s return one week visit to Malamulele. Gillian Saloojee Project leader

[email protected]


BRANCH INFORMATION

SOUTHERN GAUTENG: Mindy Silva: [email protected] Clair Hochfeld: [email protected]

0834065017

011 7262227 NORTHERN GAUTENG: Gina Loudon [email protected] 082 665 8385

KZN Gwen Reddy: [email protected] PO Box 9

Luxmi, 3207

MOBILE: 083 338 3899 HOME; 033-387 3815

OFFICE: 033-345 4686 FAX: 033-3945839 WESTERN PROVINCE: Jennifer Bradshaw: [email protected] Tel: (021) EASTERN CAPE (New Group) Clare Hubbard [email protected]

TEL. (041) 3733780 FAX (041) 3733781 CE Mobility 80 Cape Road Mill Park 6001

OFS Corina Botha: [email protected] Tel: 082 2025952 051-5201234 (W) 051-5201231(F)

Submission of material for inclusion in body of newsletter:

To simplify editing, please use Word

documents or plain text Paper size – A4.

Font: Ariel Font size: Titles 14 pt.

Body of document 11 pt. Any photos/pictures to be sent separate from text with a labelled text box in the

document at insertion point.

Rates for advertising:

In body of Newsletter Full A4 page - R 200 Textbox A5 size - R 100 Textbox ½ A5 size R 50

Scanning if not in electronic format R 50/page. Inclusion of flyers (postal & electronic)

R 100/page – to be supplied ready for inclusion - Printed and Electronic form (PDF).

NO CHARGE FOR SANDTA RELATED

COURSE ADDS

Schools/Centres/Clinics catering for people with cerebral palsy will be charged a nominal amount (R50) to help cover printing and postage.

To negotiate rates please contact the editor. e-mail: [email protected] tel: 021 794 6903 (preferable ) or cell: 082 9277776

Newsletter deadline!

Submissions for the newsletter

must reach the editor before

31 January 2007

newsletter november 2006 eksb ek - sandta · the day programme was started with an exciting...

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