7.37 Such data are needed by Welsh Government and local authorities as the basis for informing funding decisions for different placement types. Currently, this level of outcome and destination data is not available, but plans for collecting it are being piloted as part of the proposals for reform of the legislative framework for SEN (Welsh Government, 2012b). The proposals include an intention to improve the quality-assurance processes relating to children and youngpeople with additional learning needs by introducing a mapping system which would track outcomes of pupils with additional learning needs and resources allocated to meet their needs. At present, this system only covers the school system. However, local authorities and FE colleges are working together to trial the extension of the system to the FE sector. It is unclear whether the proposals will also include the ISC sector. It will be important to ensure that the implementation of this quality-assurance system allows for the individual goals and outcomes of learners with SLD and PMLD to be recorded and tracked.
In Northern Ireland, the IDG report (2006) identified similar concerns among parents with respect to the ‘benefits trap’. These concerns were reiterated in the Equal Lives report (2005). The 2009 and 2012 CDSA manifestos called for children and youngpeople with disabilities and their families to be provided with easier and targeted access to independent advice and information on grants, benefits and other sources of financial help that are available, and associated claim forms made more accessible and less complex. Families we spoke to stressed the need for clear, accessible and accurate information. For example, one parent had been told that her child could continue to receive Educational Maintenance Allowance (EMA) and the FE allowance, only to be told later that this was not possible. In addition, that key benefits for children and youngpeople with disabilities need to be index linked and to reflect the true costs of disability. The complexity of claiming benefits particularly during the transition stage was further highlighted by the PSI Sub Group reports. Other issues considered by the sub group included the lack of awareness amongst youngpeople with disabilities on the benefits which can be claimed and confusion over the loss of benefits when attending FE or entering work (PSI 2009).
It is important to acknowledge that all this is taking place within a specific national and local context. The national shortage of EPs is widely known and acknowledged as is the pressure of statutory work within the profession. The move to traded services has resulted in some special schools buying into the service more than others. Why this is the case can be hypothesised from the results in this survey but this is likely to require further targeted research. Time is a central element to this dilemma. Previous research highlighted that special schools are often in need of focused advice and support but this often doesn't occur once the child has received a statement (DfEE, 2000). EPs want to track change and progress and follow up work, something which is shown to increase the effectiveness of input and the relationship between the EP and school, but simply lack the time in order to do it. All these factors, including the perceived and / or real EP skill set not being appropriate for the special school population, affect the potential contribution the EP is able to make to special schools such as these.
Carers of people with learningdisabilities highlight the significant difficulties they have to confront during their caring role (Social Policy Research Unit, 2007). The additional financial costs of bringing up and caring for a person with severe disability have been estimated as twice as much compared to the carers of non- disabled children (JFR Findings, 2001). The additional costs cannot be confined only to the early years of parenting since over the life course, parents and carers of people with learningdisabilities would encounter a number of unexpected situations and financial challenges that will require new coping strategies to be found (Todd & Shearn, 1996a). An additional burden for carers of people with learningdisabilities is the fact that their employment levels are greatly reduced (Shearn & Todd, 1997). In a different study, Shearn and Todd (2000) presented the perspectives of mothers of children with learningdisabilities with respect to their employment. The mothers who participated in the study encountered unusual time demands and felt that their employment opportunities were restricted by social attitudes towards parents of children with disabilities. Different studies have tested the psychological cost of the employment of parents – carers of people with learningdisabilities (Todd & Shearn, 1996b; Stephens, Franks & Atienza, 1997).
The issue of change and transition is also relevant when considering mental health problems in youngpeople with learningdisabilities. This is perhaps especially important when a diagnosis of autistic spectrum disorder is concurrent, given the difficulties that change presents to people with such disorders. Due to a severe lack of research it is difficult to estimate the impact of changes from school to post-school or child to adult lifestyles on learning-disabled young people’s mental health. One study conducted by Hepper and Garralda (2001) investigated how leaving school impacts on psychiatric adjustment in adolescents with learningdisabilities. They theorised that the life changes associated with leaving school may precipitate psychopathology, due to having reduced abilities to problem solve and adjust to change (Bicknell, 1983). They then hypothesised that the process of leaving school may therefore constitute a developmental period in which adolescents with learningdisabilities are particularly vulnerable to psychiatric disorder, compounded by the withdrawal of education-based psychological services and links to child health services. Although there was a high frequency of emotional and behavioural problems prior to the transition period, there was no significant change in psychiatric morbidity for the group as a whole after leaving school. The authors put forward a number of factors that may be reflected in the insignificant outcome namely: the presence of a number of protective factors such as stable home environments, comprehensive transition planning, good level of social functioning and clear plans for future college or vocational placements; a small sample of 15 youngpeople; and uncertainty regarding the reliability of the pre-transition measure of morbidity (as to whether this was actually anticipatory anxiety). In the light of improving transition planning for such youngpeople, it would seem important to carry out further research regarding school transitions and mental health.
The site of the original study appears to have been significant to our research and suggests opportunities for further exploration. Like all special schools in England, it operates within a dominant social disability frame, providing educational support to individuals ‘in need’ of support in their development (DfE 2014a, DfE 2001). Reviewing physical development needs forms a natural part of designing a programme for a child and thereby the relationship between physical, emotional and cognitive is perhaps more visible and acknowledged in such settings. At the time of our study this particular UK special school was in the process of encouraging a focus on greater interaction and dialogue between children and staff in relation to a collaboratively constructed understanding of each child’s individual development needs and how individual progress might be recognised. In effect the school was seeking to ‘foreground the basic heterogeneity of human beings’ which Walker and Underhalter suggest is the ‘fundamental quality’ of the capability approach (2010,9). By attuning staff to the significance of their agency and of their role in enabling each child’s own agency they might better ensure that children have ‘real opportunit[y] to do and be what they have reason to value’ (Robeyns 2011)., 9) Terzi asserts that ‘more than other perspectives, [the capability approach] places a specific emphasis on [the] intrinsic value [of education]’ (2005, 218) because whilst ‘expanding capabilities, education plays a very important role in promoting the future freedoms children will have to choose their valued beings and doing’ (Ibid: 219)
Many of the sites involved in the DDA action research projects were working primarily with learners with learningdifficulties. However, several of them, in particular those working for training providers, recognised that there was a significant need to increase access to employment for youngpeople who might not have any difficulty with learning but did have a physical or sensory disability. These sites recognised that there was a problem with the reliability of data as to how many youngpeople on apprenticeships had a physical or sensory disability. While numbers self-declaring as having some kind of ‘disability, learning difficulty or health problem’ are relatively high, these figures are not broken down to establish the nature of the difficulty. Anecdotal evidence seems to suggest that, although some people with physical and sensory disabilities do gain entry onto and succeed in apprenticeships, these numbers are not as high as they should be - an issue which the project leader has raised with National LSC as requiring further research. In a series of regional events carried out by LSDA to disseminate the project findings, it became apparent that delegates from the work-based learning sector, in particular those working with apprenticeship learners, had far less experience and received far less support in working with disabled learners than their counterparts in colleges. The issue becomes a ‘chicken and egg’ cycle – disabled people do not get referred to apprenticeships, so expertise in supporting them is not built up, therefore few get referred, etc, etc. One of the sites, Chelmer Training, stated: A large percentage of our learners are interested in manual and construction trades.
face-to-face at the Tobacco Factory Theatre and were conducted by two research staff from UWE, Bristol. It was important to establish an on going rapport with participants; consequently wherever possible, the same researcher completed both the pre- and post- performance interview (see below). All of the interviews were audio recorded and transcribed in full. Initial interviews aimed to ascertain participants’ fears, expectations and feelings about involvement in the musical drama production and performance. Although youngpeople were not asked specifically to share their experiences of care, this did sometimes happen as part of the interview process. Additional biographical data collected throughout the interviews is therefore included within the evaluation to describe the breadth and intensity of young peoples care experiences. This takes account of the types of challenges youngpeople have faced to date particularly around issues of participation and exclusion. Youngpeople were also asked their views about any previous experiences of arts interventions. At the end of the interview, youngpeople were given a small gift token of £5 as recognition and thanks for their involvement.
Fricke et al. (2012, in press), went on to modify the Oral Language programme for younger children, and to supplement it for ten weeks with work on letters and phoneme awareness. They carried out an RCT with 179 children with language difficulties and hence at risk of reading problems. At pre-test in March–April 2009 the children were aged on average 4:0 and in nursery school. Over three school terms (one in nursery, 2 in Reception) 89 of them received 30 weeks of an oral language intervention, while the rest followed the normal nursery/Reception curriculum. All the children were tested before the intervention and at its end, and again six months further on (by this point, November–December 2010, they were aged 5:8 on average and in Y1). The intervention group showed significantly better performance on measures of oral language and spoken narrative skills than the control group at post-test and at follow-up. Gains in word-level literacy skills were weaker, though clear improvements were observed on measures of phonological awareness. Importantly, the improvements in oral language skills were related to a strong advantage for the intervention group in reading comprehension at follow-up. Curiously, however, this advantage was not mediated by reading accuracy, on which the groups did not differ. This result is the opposite of one found by Hatcher et al. (1994), and will require deeper investigation before it is concluded that improving children’s reading accuracy does not help improve comprehension.
In 2003, the Valuing People Support Team gave the Leicester Learning Disability Partnership Board some funds to set up a small project to look at how we might do this. A part time Development Worker was appointed for one year. The worker was given the task of raising awareness of person centred planning amongst our Asian communities and getting them involved. At the same time we were also looking at what the problems might be, and how these could be overcome.
encourage and support the young person to make choices and decisions, try new activities and keep in touch with their friends. Local voluntary organisations and befriending schemes can provide a way for youngpeople with learningdisabilities to get involved in community-based groups, religious groups and social activities. Direct Payments can now be made to over 16s in place of social care services, so that the young person can employ someone to accompany them to activities of their choice. Direct Payments are also available to carers. Self-advocacy groups can help youngpeople learn to speak up for themselves, share their experiences and support each other.
Despite using a distinct population of children and adolescents with SEND and unique risk factors, support is offered towards other researchers within the field who have found the same non-linear relationship with cumulative risk upon various types of problem behaviours (e.g. Bierderman et al., 1995; Forehand et al., 1998; Greenberg, Speltz, DeKlyen, & Jones 2001; Jones et al., 2002; Rutter, 1979). It could be argued that the coping resources youngpeople utilise to counter lower levels of risk may fail once a threshold is reached, and they are unable to overcome the negative influences in their lives, leading to behaviour difficulties. This may be a particularly salient factor for those already disadvantaged by having SEND, as Humphrey et al. (2013) have argued that this group of learners are considered to be particularly vulnerable in the education system.
Introduction: In recent years there has been an increase in the number of looked after children. Despite well documented vulnerabilities to mental health problems among this population, there continues to be poor uptake and utilisation of Child and Adolescent Mental Health Services (CAMHS). Aim: To elicit views of foster carers regarding the mental health needs of children and youngpeople in their care and their experiences of accessing mental health services. Methods: A Grounded theory approach and semi-structured interviews with ten foster carers. Results: The experience of being a foster carer was the core category, with three major themes: 1) Foster carers’ psychological understanding of challenging behaviour; 2) Barriers to accessing CAMHS; 3) The importance of support. Discussion: A key finding of this research is that barriers to accessing CAMHS were not experienced at the point of referral, but later, once within the mental health system. A positive finding is that the foster carers demonstrated good mental health literacy and a pro-active approach to seeking help for the children in their care. The foster carers also expressed a need for more support structures related directly to the viability of the placement. Implications for practice: Mental health nurses have a pivotal role in providing: a more responsive and needs-led service for this population; professional support to foster carers to include facilitating peer support; and clinical interventions for the looked after children.
Three quarters of local authorities surveyed either already had in place (54%) or were developing a written policy document on dyslexia. Eight local authorities provided weblinks to their policies. Three quarters also produced guidance for schools and governors on dyslexia friendly classrooms, and 80% produced documentation on literacy interventions: guidance on both literacy interventions and study skills was more frequently reported by local authorities without and not working towards the BDA quality mark. Other documentation provided by more than half the local authorities surveyed included guidance on learning styles, study skills, multi- sensory teaching, and use of ICT. More than a third also produced guidance on maths interventions, and access arrangements for examinations. Other documentation written in by respondents included guidance for schools moving towards achieving ‘dyslexia friendly’ status, guidance on meeting individual needs, dyslexia audit documents, and DVDs and CD Roms demonstrating good practice.
intervals, both will again take up to one hour. This will show the gains your child has made and maintained, and help assess the effectiveness of the program. Parents/Caregivers will also be asked to complete a set of questionnaires before, after, and at 12 month intervals following the intervention; this will take approximately an hour. This is to determine whether the gains made during the program have been maintained, and whether your child requires further intervention. If this is the case your child will be offered treatment at Pathways Health and Research Centre. These pre-assessment questionnaires will be distributed at the beginning of the first FRIENDS session. The questionnaire packages are relatively lengthy and some questions are quite personal. Some of the material in the questionnaires may be confronting and make one feel uncomfortable. It is important to know that all of the information you provide on the questionnaires is confidential. Your data will be entered electronically through a secure survey system that is only accessible by researchers and will be anonymised once extracted from the system. Your name will not be associated with the questionnaire when placed into the database. If you feel discomfort while answering the questionnaires, we encourage you to call one of the registered psychologists working with this project for support. If you have any other difficulties or questions throughout this process, you can call the researchers or chief investigator at any time.
later stated he did not have many ‘pals’ locally. An older boy named a couple of his neighbours as friends with whom he played, but it then transpired that for some time they had refused to talk to him. In the separate interviews with siblings and parents, we learnt more about the children’s experiences with other youngsters in the area. They described incidents where children had been called nasty names, taken advantage of and, in one case, returned home with torn clothes, apparently as a result of physical aggression from other children. One girl had been the subject of particularly cruel harassment, not just by children but also by adults: this is described in more detail in a pen profile below. The children’s friendships at school are also discussed later.
covered by this study could, at times, appear quite limiting, especially when parents felt that they should make the final decision. However, it is important to place final decisions in the context of choice-making as a whole because the experience of involvement can, as Edwards & Elwyn (2006) note, be just or in some cases even more important than who makes the final decision. Although not specifically related to people with learningdisabilities, Entwistle & Watt (2006) demonstrate the importance of participants’ subjective views and
Participants were presented with a picture (in A1 size poster format) of an imaginary young person affected by an unidenti ﬁ ed health condition. They were invited to name the character and suggest possible health pro- blems. The facilitator (AF) probed participants ’ views on: (1) what outcomes might be important to the char- acter and (2) why these issues might be important in terms of the impact on the character ’ s life, health and well-being. After the fourth focus group, three further posters were developed to facilitate more detailed discus- sions around the outcome areas emerging from the pre- vious focus groups. These posters represented the following areas: physical health, mental and emotional health, and social and community issues. Speci ﬁ c prompts were used in these later focus groups (and all individual interviews) to stimulate more detailed discus- sion. Prompts explored participants ’ views on: (1) how the character in the poster might feel about each of the issues, (2) whether an issue was likely to be important to them and (3) what could be done to help improve the outcome. This structured conversation gave the partici- pants the opportunity to explore and de ﬁ ne the out- comes according to the importance they attached to them. After a break, participants were shown examples of the same questionnaires shown to the parents and asked about their acceptability, ease of completion and whether they captured relevant outcomes.
Some teachers described considerable involvement with a particular child or young person. One wrote of responding to a crisis which required taking their own family along to the distressed child’s home. Some of the families’ circumstances were described as having an obviously detrimental impact on children and youngpeople, which provoked some teachers to express the wish to provide direct care themselves by taking them into their own homes. This highlights not only the high level of commitment on the part of the teachers but also a sense of despair about the ability to effect a positive change in the young person’s circumstances. When teachers wrote about the need to access other resources, they tended to describe referring on mainly to other professionals within the educational system, such as senior staff, educational psychologists, school doctors and nurses. Some arranged referrals to clinical psychology, the child’s GP, child and adolescent mental health services (CAMHS) and to other health professionals, such as a dietician or speech and language therapist. Accessing other resources was sometimes seen as a positive option, as in the case where a teacher referred on a young person with emotional difficulties and described the outcome as satisfactory because of a: ‘multi-agency approach, close team working’ (EDSL03).
The determination of terminality in these situations takes some time to establish with certainty that the child is in an unrecoverable situation. (3) The increasing use of technology in health causes misrepresentations in the processes of dying, putting medicine in check, within the limits of its ability to "heal." (4) As a result of the denial or avoidance of death postures, it is difficult for the health professional not only to deal with death, but also to care for the dying patient (5). One of the causes of suffering of the health professional is the feeling of impotence / omnipotence in the face of the possibilities and limitations of medicine and the consciousness of finitude to which the professionals are subjected, when they deal with a reality where the disease and the imminence of death are so real (6,7). From the wide range of possibilities that technological advancement offers today, health professionals, especially ICUs, are experiencing intense dilemmas about "how much to invest without aggression?" Or "how long to prolong life?" (8, 9). As noted in this research, these are the larger, more intense, and deeper issues that influence the significance of dysthanasia, regarding the dilemmas experienced by intensive care professionals regarding the terminally ill child admitted to the ICU. Thus, the work in the ICU places the medical professional in confrontation with choices and decision-making involving technical, ethical and moral aspects deeply intertwined with the technological incorporation in the health area. Depending on his decision, he may either interrupt the care or make resuscitation efforts (10). In this context, this study presents results from a research that had as main objective to know how physicians of the neonatal and pediatric ICUs mean distanasis.