This review is a reflection on an evolving and dynamic skills-sharing approach and a preliminary step in the quest for a model of best practice for training and empowering carers of groups of diversely disabled children in formal and informal special care centres in the Western Cape, South Africa.

The policy environment – in brief: International and local policies provide a strong directive for adopting rights-based approaches to service delivery for people (including children!) with disabilities. At the global level, the United Nations Convention on the Rights of Children emphasises the rights of all children with disabilities to access all the help they need (United Nations 1989; Article 23). Furthermore, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) elaborates on the rights of persons with disabilities in detail, including the right for persons with disabilities to have access to communication and to participate in their communities (United Nations 2008). South Africa has formally ratified the UNCRPD and therefore accepted it as legally binding. In terms of international education policies, South Africa had also signed the earlier ‘Salamanca Statement and Framework for Action on Special Needs Education’ (UNESCO 1994) – committing to the principle of education for all.

At a national level, South Africa has some of the most progressive human rights-based legislation in the world, yet its implementation is often lacking (ACPF 2011; Dube 2006; Ogot, McKenzie & Dube, 2008; Schneider & Saloojee 2007). National policies detail the vision of a ‘society for all’ and the Integrated National Disability Strategy (INDS), serves as a framework for the integration of disability issues in all governmental development strategies (Office of the Deputy President of South Africa 1997).

However, children with severe disabilities, including those with a severe or profound intellectual disability and an IQ of less than 35, have been formally excluded from fundamental educational and training inputs for many years (WCFID 2011; Western Cape High Court 2011; Wood et al. 2009). Special care centres for these children have not been included in any form of strategic planning or budgetary provision for appropriate educational services or even human resources for basic stimulation and training provision (Wood et al. 2009). Spearheaded by the Western Cape Forum for Intellectual Disability (WCFID), efforts to challenge and change this legislation have finally reached a victory in the High Court of South Africa in November 2010 (Western Cape High Court 2011). While audits are currently underway to assess the exact needs and possibilities, the implementation of this ruling will take time.

On another front, the National Rehabilitation Policy (Department of Health 2000) addresses the provision of assistive devices in South Africa, including augmentative and alternative communication (AAC) devices. Globally, technological and other developments in the specialised field of AAC have delivered revolutionary possibilities for people with severe communication disabilities (Alant 2005; Beukelman and Mirenda 1998; Schlosser 2003). However, the translation of these technological developments and other evidence-based AAC strategies into functional communication is still decades away in many under-served and low income communities, where policy rollouts, financial and human resources in terms of skills and numbers are lacking (McConkey 2005). This is clearly evident in the population of children with severe or profound disabilities in the extensivelydisadvantaged contexts of the Western Cape.

In the meantime, at grassroots level, there is an urgent need for awareness-raising and enskilling of centre-based carers, to provide the means and moreover the opportunities for the most basic, pre-verbal interactions and non-verbal communications for children with severe and profound disabilities.

The situation at grassroots level: A repeatedly observed situation in disadvantaged areas of the Western Cape is that mothers of children with severe disabilities cannot seek employment as they cannot find day care facilities for their children. Very few mainstream crèches and day care centres accept children with disabilities, especially severe disabilities. This is sometimes due to negative, albeit unknowing, attitudes and pressures of other parents, not to accept children with disabilities due to the additional care they require and/or persistent beliefs that disabilities (or at least their causes) are contagious (Chataika 2011; Duncan et al. 2009; Ingstad & Reynolds-Whyte 1995). Whilst there are some encouraging examples of mainstream crèches accommodating children with disabilities and of other parents embracing and assisting such children and their families, this is still the exception rather than the norm. Several special care centres have thus been started by mothers of disabled children themselves who have extended their care to other disabled children. Some of these community-based initiatives, which began as small informal centres, have developed into larger, more formal special care centres. As the centres grow and more help is needed, other unemployed mothers who seek care for their children with disabilities sometimes begin working as volunteers or become carers at such centres.

These community-based initiatives usually struggle through years of self-funding or are run on a portion of the Care Dependency Grants¹ of those attending children who receive them. Even after formalisation and qualification for formal subsidies, the available funding in the special care centres only covers minimal human resources. The observed norm is disproportionately high child-to-staff ratios and poorly paid staff or volunteers, who are mostly untrained, but include enormously motivated and capable mothers of children with disabilities themselves. These human resources are insufficient to implement even the most basic individual intervention plans, as carers are in ‘survival mode’ and barely manage with the basic care needed. In spite of extremely difficult conditions such as large, mixed-impairment groups and cramped and under-resourced facilities, carers continue to provide excellent and loving basic care to the children – often for no or below-minimum wages.

It is not uncommon to find informal centres where children with severe disabilities are treated as sick patients, confined to high-sided cots, fed, cleaned and medicated – albeit with the utmost care – very much in line with ‘medical model’ thinking (Duncan et al. 2009; Ingstad & Reynolds-Whyte, 1995; Ross & Deverell 2004). There are no therapeutic inputs or stimulation, nor opportunities for the children to explore, play or interact with others at their respective levels of ability. However, they need opportunities and support to enable them to develop to their utmost potential and to achieve the best quality of life possible.

Information from parent training programmes such as the internationally renowned Hanen Programme (Pepper & Weitzman 2004) and the Portage Project (Sampon & Wollenburg 1998), as well as local research with primary caregivers in nuclear family situations (Popich, Louw & Eloff 2007) provided helpful content but limited application for caregiver training in these centre-based group contexts. Likewise, research about centre-based caregiver training in well-resourced, developed country contexts with low child to carer ratios (Girolametto, Weitzman & Greenberg 2003), or even more local programmes for specific disabilities (Hambisela, n.d.) were found to have limited application in the specific local contexts of under-resourced and understaffed centres, with previously untrained carers caring for large groups of children with diverse disabilities, ages and levels of functioning. However, provisional local research results on addressing the social context, or human interactions within the environment of residential settings for orphaned and vulnerable (not necessarily disabled) children, through caregiver training, are of great interest and hold much promise (Koch & Franzsen 2012; Koch & Kok 2012).

In the area of basic communication, the need is for carers to be empowered to facilitate and support meaningful interactions and optimal communication development – albeit mostly non-verbal – for the children in their care. Several of the NPOs who have been backing grassroots special care centres for children with severe disabilities, are supporting the implementation and exploration of training approaches for such basic communication.

This preliminary, descriptive review of what has been helpful and what has not, is a small step in the much needed, more formal enquiries into questions of effective, relevant and sustainable centre-based communication training interventions.

Funding restraints and the number of centres that requested training in basic communication development, meant that the training was offered at a total of sixteen special care centres, in cycles of three to six three-hour sessions. Where possible all the carers in a centre were included in the training, but emergency needs including washing children, cooking and cleaning, etc. meant that carers often came and went during the course of a session. All the carers were female, with ages ranging from 18 to beyond retirement age (65+).

The challenge for this therapist offering the training in basic communication was to utilise the limited time in the most effective and efficient way. Crucial considerations included the lack of physical resources (e.g. space and equipment) in these centres; the diverse mix of impairments represented in each centre; the wide age range of children often in a single group (three to 18 or even 21); the high child-to-carer ratios (often up to 10:1, and 18:1 in one situation); the labour-intensive basic, physical care needs (feeding, cleaning, frequent medication etc.); the challenges facing the biological mothers in carrying out individual stimulation programmes at home; and the fact that the majority of the centre-based carers have no formal, basic training.

The emphasis and priorities of this training therefore focused upon what would be most relevant to as many of the children’s needs as possible, what could be implemented by the already overstretched carers in a sustainable manner, and what would enhance the children’s functional interactions, basic communication and quality of life.

• Opening challenge
• Tutorial (opening challenge plus tutorial made up about 20% of session time)
• Hands-on skills transfer with carers and children (about 70% of session time)
• Wrap-up with questions, self-evaluation and next steps (about 10% of session time).

Opening Challenge: The purpose of the opening challenge was to focus the group and to establish the training needs and priorities of the carers. This time was guided by the three Freirian questions (Freire 1970; Hope & Timmel 1995, 1999; Hartley et al. 2005): ‘What is the problem?’ ‘Why is it a problem?’ and ‘What can we do about the problem?’ The focus was thus upon the carers’ perceived priority problems, challenges and possible solutions.

Tutorial: The tutorial section included teaching topics such as ‘Basics of communication development’, ‘Diverse communication disabilities’ and ‘Participatory communication strategies’. There were slight variations according to the self-identified needs of each centre and different groups of carers. The format was an interactive teaching approach focussing upon examples contributed by the carers present.

FIGURE 1: ‘The Communication House’ adapted from Let’s communicate (WHO 1997).

• children with severe cerebral palsy, who could not speak or use gestures but could understand almost everything and were extremely motivated to communicate

• children with autistic behaviours whose ability to connect with others was the most affected area and often resulted in challenging behaviours

• children with Down syndrome whose strengths included their desire to connect with (and please) others and their effective use of a limited repertoire of a few clear utterances for many meaningful, purposeful interactions.

While the above is an oversimplification, it was useful in helping carers to understand why children differed so much in their needs of stimulation and how they could be grouped for optimal stimulation and communication opportunities. For example, one carer had a group of eight children, six with severe intellectual disabilities, relatively strong physical abilities and very low abilities to connect with others (i.e. with autistic tendencies); and two girls with much higher levels of understanding and a great desire to communicate, but limited means of expression due to severe cerebral palsy and no speech nor sufficient motor abilities to gesture or sign. Grasping these differences, the carer proceeded to position the two girls next to each other, where she could direct higher level visual stimulation and expectations to them together and watch for eye blink and other body language responses from them more easily than when they were placed among the less communicative, more physically active and distracting peers, where she often missed the two girls’ communication attempts. Moreover, the two girls could develop a real friendship through their very astute perception of one another’s subtle non-verbal communication.

• Challenging behaviour, secondary to intellectual disability, and often the child’s only means of communication (Beukelman & Mirenda, 1998), was the most frequently given reason why parents and carers could or would not include children in family or social activities. The links between developmental delays in preverbal skills (such as attention, listening skills and most especially, turn-taking) and challenging behaviours were explored with carers and the children in their care. Practical strategies such as reducing background noise levels, and consistent cause and effect systems like ‘time out’ were practiced to support these preverbal skills, the lack of which often caused frustration and challenging behaviours – which contributed to the vicious cycle of exclusion and more asocial behaviours.

• Even within the centres, some children were previously regularly excluded from group games or activities, and their inclusion and participation was addressed. Examples included those with the most severe physical impairments, who were wheelchair or buggy users or positioned in standing frames or even side-lyers, and were previously thought to be incapable of participating in ball and other group games. The need for these children to have opportunities to play (e.g. the excitement of having a turn to receive and pass on the ball like everyone else) was emphasised. Likewise, children with severe intellectual disability and related challenging behaviours (such as ‘autistic’ behaviours and/or attention deficits and hyperactivity) were previously excluded on the grounds that it was too difficult to include them or that they were thought to ‘prefer to be on their own’. Their need to learn to focus, attend, listen, wait for their turn etc. was elaborated by referring back to the ‘Communication House’ presented earlier (WHO 1997). Specific strategies to include all these children in the circle activities, and to facilitate the participation of all, were problem-solved collaboratively and then practiced in the hands-on session, outlined below.

Hands-on skills transfer with carers plus children: Time allocated to hands-on skills sharing was aimed at practicing skills that had first been discussed during the tutorials, and included:

• Morning rings, greeting and naming rituals emphasising individual children’s names and getting their attention and encouraging them to participate vocally or with basic gestures. These were already widely, although in some centres irregularly, practiced. Therefore, value-added aims such as enhancing active participation, developing attention, listening skills and turn-taking abilities during these activities were applied and practiced.

• Song circles: These had previously also been implemented inconsistently. Building upon these, the repetition of a small number of known and loved songs (preferably with some actions and/or a repetitive chorus and clapping) was found to encourage participation more than a wider ever-increasing repertoire of songs. Carers were made aware of the value and enjoyment of repetition for the children in their care. The common tendency to reinforce only responsive children was counteracted by strategies that supported the active participation and enjoyment of each and every child according to the child’s ability. It was repeatedly observed that carers were surprised by ‘unresponsive’ children’s capacity for enjoyment during these activities. In line with Sameroff and Fiese’s well-known research on transactional regulation (2000), it was also observed that the reciprocity between child enjoyment and carer enjoyment contributed to the sustainability of these inclusive, multi-goal activities.

• Inclusive ball games: These were practiced as a strategy to help carers to meet different goals (such as attention, turn taking etc.), for individual children while engaging a whole group of diversely disabled children in a single activity. Other, similar group games were also encouraged as an empowering strategy for carers who, due to the staffing shortages, often had to cope alone with a group of up to ten (or even 18!) diversely disabled children. Those who were physically and intellectually stronger could be interspersed between those in buggies and/or those temporarily restrained on children’s chairs to participate better. The task of waiting for one’s turn would take repeated practice for those with attention and/or hyperactivity difficulties. However, through the carer’s physical facilitation, children who were usually physically excluded could experience participation and have fun, while those with attention and behaviour difficulties got valuable practice at turn-taking, attentive looking and listening. The enjoyment of both children and carers was a factor supporting the sustainability of such games that support pre-verbal skills and inter-personal communications (Sameroff & Fiese 2000).

• Participatory group puzzle activities: These were implemented as another strategy to provide pre-verbal and early communication stimulation for attention, turn-taking and basic interaction for a whole, diverse group simultaneously. This took into account the scarcity of educational equipment such as pegboard puzzles and instead of wanting to give each child a puzzle to complete, each child would only get one piece to hold and await their turn as the carer moved the puzzle around and facilitated each child’s participation in the completion of the puzzle as a group effort – with much excited reinforcement of skills such as waiting for one’s turn and saying or indicating whose turn was next.

Wrap-up with questions, self-evaluation and next steps: At the end of each session, a brief time for wrap-up was introduced to meet the need for consolidation and to serve as a monitoring strategy. This was guided by two basic reflective questions, ‘What did I learn today?’ and ‘What new game, activity or strategywill I try out in the coming week?’ These few minutes at the end of each session became an integral and valuable part of the on-site training and provided the speech therapist-trainer with insights into the strengths of the carers, training effectiveness and gaps that needed to be addressed as a priority in a subsequent session. It was informally observed that carers readily implemented these self-reflections and added to them during the week – as was evidenced by their responses in the opening challenge of the subsequent session.

• Trainer-initiated skills-sharing with carers resulted in carers becoming passive and/or withdrawing, and leaving the trainer to do the activity in question. Therefore, it was necessary to get buy-in from the carers in terms of what they felt were priority problems and what they had already tried.

• Individualised multi-step intervention programmes for individual children were difficult or impossible for the carers to implement in addition to their workload of basic ‘survival’ care. Therefore, activities that could benefit several children at once were more readily and sustainably applied.

• ‘Theoretical overload’: in several centres, there were written notes, posters and other forms of reminders from past on-site training interventions covering various topics on the walls. In most cases, these were not being implemented, and discreet enquiries elicited responses including, ‘There isn’t time to read it’ and ‘I don’t understand it’ and, in several observed situations, carers lacked the English language and/or literacy skill requirements of the written notes and posters. Therefore, written inputs were minimised.

• There had previously been piecemeal interventions by different therapists, with contradictory inputs. This was due to the precarious funding environment of NGOs and volunteer organisations working in the sector, and diverse organisations contributing short-term training inputs or one-off sessions. Unrelated or contradictory training inputs resulted in noticeably confused carers, and sometimes indifference or disinterest in training inputs. Therefore, the opening challenges and beginning with what the carers remembered from previous multidisciplinary training inputs helped

A: ‘… I can talk to a child even if he cannot talk’

B: ‘… you must never underestimate them’

C: ‘… every child can be included in the games’

D: ‘… all of them enjoy ball games, even the buggy-ones’

E: ‘… every child has something to say’

F: ‘… even without speech, they can use their voice’

G: ‘… every child’s quality of life can grow’

H: ‘… if I enjoy myself, the children will have more fun.’

These responses helped to set the tone, level and pace of communication inputs during the training. From added observations and additional informal carer feedback, the following were identified as useful approaches that could be built on in future training:

• Building on the existing assets in each centre (for e.g., using existing song circles or naming rituals and adding value, as outlined above)

• Prioritising care for carers who were overstretched and under-resourced, and needed to feel understood and nurtured in order to care for the children with warmth and creativity

• A combination of dedicated sit-down information sharing and discussion, followed by hands-on approaches that took place in as natural a context as possible

• Opportunities for the carers to verbalise their needs as well as their problem-solving strategies and successes in terms of communication with the children in their care

• A brief, reflective self-review at the end of each session to consolidate and strengthen implementation of the learning experience. Language or terminology misunderstandings in the earlier tutorial section sometimes only surfaced during this time – but could at least then be resolved!

Some issues were identified and then addressed in response to needs or requests raised at specific special care centres with observable, continuing implementation during follow-up visits. These included:

• The replacement of obscure and non-transparent hand signs with appropriate, easily understood gestures, for example, a ‘salute’ greeting replaced the previously taught and non-transparent American Sign Language (ASL) ‘good + morning’ at one centre. This had immediate and lasting results. At least two children readily adopted the greeting and got immediate and friendly responses, even from uninformed members of the public. Six months later, the salute gesture was observed to be part of the spontaneous repertoire. This was used to effectively ‘connect’ with members of the community.

• Sportsmen’s wristbands, traditionally used to wipe perspiration off the forehead, were introduced as a means of drooling control for children who had a mild-moderate saliva control problem. With repeated reminders from carers, this form of control could replace less socially acceptable bibs in children who were physically able to wipe and cognitively able to grasp the instruction to do so – and in some cases increased inclusion in family and social events due to decreased ‘messiness associated with drooling’ were reported by carers who had implemented the ‘wristband training’ consistently with certain children. An increase in self-confidence (and upright posture!) was also reported in at least two cases.

• Inclusive games and song circles were seen to be sustainable as they helped the carers to provide enjoyable stimulation to a group and meet diverse goals with variably disabled children.

Student training in the field of communication sciences and disorders (speech therapists) – as well as other rehabilitation disciplines – needs to address the preparation of students for the increasing needs related to severe and profound disabilities, especially in the field of intellectual disabilities. More alternatives to individual therapy models, including CBR strategies and training and, moreover, the enskilling of speech therapists to provide contextually appropriate carer training at grassroots levels need to be addressed both in undergraduate training and in continuing professional development inputs.

Furthermore, speech therapists’ collaboration with community-based rehabilitation workers in terms of carer training holds great potential for covering the extensive training needs newly opened up by the recent High Court ruling that children in special care centres will receive appropriate stimulation and/or educational inputs (Western Cape High Court 2011).

Formal research is needed to explore and evaluate aspects of such an on-site communication training approach. The need is crucial, to present an evidence base for more effective, efficient, relevant and sustainable strategies of empowering centre-based carers to provide optimal communication opportunities and support, for the children in their care to enjoy the basic human right of personal interaction and communicative participation, whatever the severity of their disability.

Thank you too, to the following organisations who have afforded a variety of rich opportunities to explore the needs, possibilities and models of best practice in hands-on training in basic communication development, in the centres under their care: Cape Mental Health Society, Chaeli Campaign, Western Cape Forum for Intellectual Disability and also Shonaquip/Uhambo Foundation and the Western Cape Cerebral Palsy Association.

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