Low-incidence condition
A low-incidence condition is an extremely uncommon condition affecting the relatively small number of individuals (Brown & Brinkman, 2004). Unfortunately, the educational practices and services required to meet the needs of low-incidence disability learners have received insufficient attention in psychology research literature (Freeman & Alkin, 2000; Campbell, Reilly, Henley, 2008), leaving professionals unconfident to work with this population. This essay will analyse the topic by critically discussing the family, school, teachers and Educational Psychologist’s (EP) perspectives on working with children with a rare condition. Additionally, the child’s own perspective will be presented. This is done in order to present a balanced and comprehensive view of the child as well as the family/school, providing a proper stance to base the argument upon. Finally, implications and guidelines of EP will be addressed throughout this entire paper.
The Child’s Voice
Children have the right to receive and provide information to express their opinion and given due weight according to their age, maturity and capability (Damodaran & Sherlock, 2013).
In children with a low-incidence disability, since they are trying to manage their condition, it is crucial to be receptive to their needs and the kinds of support they seek (Lightfoot, Wright & Sloper, 1999). Therefore, aside from assessing a child’s learning needs and identifying the additional support they require, it would be beneficial for school and health staff to build a supportive role throughout the child’s journey.
Importantly, it is now known that students often feel uncomfortable seeking help from health professionals who have very little knowledge about their individual case/treatment (Lightfoot, Wright & Sloper, 1999). While health professionals work under multiple constraints, there should be more scope for paying attention to students’ views.
Another issue regarding the child’s voice is that because health professionals do not pay enough attention to the students’ views, it is often found that their opinion is neglected because practitioners assume they are incapable of making decisions (Lightfoot, Wright & Sloper, 1999). However, it is important to practice the concept of rights for every individual, which is often overlooked. This is supported by legislations which examine international child rights and also the concept of childhood that underlies it (Burman, 1996).
Family
Emotional dilemmas appear to arise between parents and professional personnel who are working on the child as reports have shown that support for families is limited as concerns are not voiced (MacBeath, Galton, Steward, MacBeath & Page, 2006). Studies have shown that it is critical to understand the parents’ viewpoints as the information provided by them could be valuable to assist in designing their child’s educational program (Campbell, Reilly, Henley, 2008).
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The opinion of parents is valuable regarding the condition of their child. Studies have indicated that parents who are concerned about their child’s well-being are generally self-aware and aware of the world around them. They are aware of the updates issues and the current situations which will lead them to take rational yet logical decisions (LeMasters, 1970) about their child’s educational provision.
Moreover, parents are an integral aspect of the process because low-incidence conditions are rare, information could be lacking, and some of these children could possess low communication skills. Parents are undoubtedly more aware of their child’s particular types of communication, patterns of learning and social nuances (DfE, 2015) as most children spend their growing years with parents. Therefore, a collaborative approach between parental knowledge regarding their child and professional expertise would seem to be the most effective way to understand the child and implement a successful educational program (Campbell, Reilly, Henley, 2008).
In agreement with, it is reported that there is a strong relationship between parental reports and assessment results (Dinnebeil & Rule, 1994) and even more so for low-incident population (Campbell, Reiley & Henley, 2008).
Given that parents may experience distress during this difficult time, counselling, support groups or professional support could be implemented in the future. Workshops and seminars could also be introduced to help parents better understand the needs of their child and this could further help them to decide upon the best provision for their child.
School
While schools play a major role in the progress of students with special educational needs regardless of a high or low-incidence condition (Jackson, 2008), it was reported that teaching staff and professionals know very little about the autism spectrum and special educational needs (Macbeath, Steward, Galton, MacBeath & Page, 2006). Often, this lack of expertise and professional training in meeting a wide spectrum of needs could lead to school professionals resorting to common sense or instinct towards handling children with low-incidence needs (Macbeath, Steward, Galton, MacBeath & Page, 2006). Being negligent with or without intention could cause discrimination towards students and are detrimental to their learning.
According to the Equality Act (2010) which applies to all England and Wales maintained and independent schools, it is unlawful for the responsible body of a school and EPs (HCPC, 2015) to discriminate against race, disability, religion and sexual orientation.
Moreover, according to the Department for Education (2015), schools must make reasonable adjustments and anticipatory duties for children with SEN. However, due to minimal knowledge or training in SEN, school staff could overlook on these responsibilities. Not only could this negligence hinder student’s learning, but barriers to learning could multiply and treatment to eventually cost more at a later stage. Therefore, it is critical to address the root of the problem and that refers to the initial stage of professional training in all teaching professionals.
As low-incidence conditions are rarely studied and understood, it could take a significant effort and time to implement provisions for these children. According to Campbell, Reilly, Henley (2008), one of the main concerns for special needs educators is the challenge to create an effective educational program based on varied individual needs. There is evidence that differentiated teaching is crucial to students’ learning, and especially for students with additional needs (Lawrence-Brown, 2004).
According to DfE (2015), high-quality teaching and differentiation for individual pupils is the first step for SEN. In agreement with, HCPC (2015) indicated that professionals are to be able to develop and apply effective yet creative interventions to promote psychological well-being, social, emotional and behavioural development of every individual child with unique needs.
Differentiated instructions could only be made possible when teachers implement their teachings according to different student’s mode of learning. On the other hand, it could be challenging for teaching professionals to step out of their comfort zone and teach in a different way from the norm. For these reasons, teachers are required to be flexible in their teaching approach and adjust the curriculum and presentation of information according to the learners’ needs.
However, devising an effective learning environment requires a large amount of time, experience and appropriate strategies (Macbeth, Steward, Galton, Macbeth & Page, 2006). It is also noteworthy to mention that no two students are identical in terms of behaviour, attitude, intelligence and personality. Teaching students according to their unique learning needs not only help the learner learn in the most productive way, but could also enhance healthy teacher-student relationships.
Apart from varied individual needs, access to specialist help has been reported to be difficult (Macbeth, Steward, Galton, Macbeth & Page, 2006). Reports have in fact shown differences in placing a student with low-incident disability in schools in urban settings as compared to rural areas. Larger urban districts were able to employ a more diverse and specialized staff whereas more rural respondents reported they had to contract outside agencies to meet the needs of students (Pennington, Horn & Barong, 2009). This demonstrates that not only the school, but larger context such as the community, plays a major role in a child’s learning.
Finally, the implementation of teacher training in Special Educational Needs (SEN) is a critical step which should not be neglected or ignored. There is evidence that training a teacher would not only be a way of investing in their welfare but it will also increase their level of motivation with the job and their level of satisfaction (Freeman, 1989).
Teachers
For educational programs to be successful, special educators are obliged to familiarize themselves with the curricular content, the characteristics of disability, related assessments, instructional strategies and the ways to effectively incorporate appropriate academic support technologies (Brownell et al., 2010). These could take the form of specialized teacher-training, seminars, and supervision. Nonetheless, it has been reported that teachers expressed a sense of emotional turmoil over the lack of adequate preparation and satisfying mentoring supports (MacBeath, Steward, Galton, MacBeath & Page, 2006).
Given that teachers have found it challenging to work with children with SEN MacBeath, Steward, Galton, MacBeath & Page (2006), this illustrates that given the rarity of low-incidence condition, this may also apply to children belonging to this population. The same authors also reported that these teachers who are struggling in implementing optimal teaching for students with SEN are often left with self-guilt. Their biggest worry is that they are letting down both the children with SEN, as well as the rest of the class.
It will therefore be beneficial for schools to evaluate the effectiveness of professional mentoring, as well as the well-being of all professional staff, by supervision or feedback. Nonetheless, the use of feedbacks or supervision could not be completely credible as there is a possibility that professional staff could be hiding their worries in handling students with SEN, as they do not wish to be seen as incompetent. Hence, more studies should be done in this area to facilitate a more cooperative and forthright relationship between school and professional staff.
As it is the Eps’ responsibility to contribute to and benefit from the consultation, support, and training to increase understanding of the needs of clients (BPS, 2008), EPs are required to gain information about the disability and needs. Additionally, it is the responsibility of EPs to draw on psychological theory and research to provide a framework for describing a client’s disability and needs. However, given that it is a rare condition, there may be limited sources of information available. Therefore, it is important to promote the multi-agency side of our work with other health, education and social care professionals to seek more information on the rare condition.
As mentioned earlier in this paper, it will also be helpful to work collaboratively with parents as they may have gathered more valuable information regarding the unique needs of this child.
Despite research supporting the notion general education classrooms as places in which students with severe disabilities can best access the general education curriculum (Cosier, Causton-Theoharis, & Theoharis, 2013; Jackson, Ryndak & Wehmeyer, 2008; Soukup et al., 2007), schools and professionals are consistently facing challenges in this field. Although inclusion allows students with severe disabilities to learn from experts (Jackson, Ryndak & Wehmeyer, 2008), teachers contemplate that students with complicated disabilities could be better served in special schools where special teachers are better trained in special educational needs.
EP implication and Limitation
As the main work of an EP includes consultation, it is inevitable that challenges such as conflict of interests with other parties arise. EPs should abide by the principles indicated in the Children’s Act (1989) which highlights the importance of support towards those responsible for the child as well as meeting the needs of the child. On such occasions, EPs are responsible for assisting in resolving disagreements among all parties (carers, multi-agency professionals, school professionals).
It was reported by Farrell et al. (2006) that respondents expressed that their perception of the impact of an EP’s work reduced due to the limited amount of time allocated for consultation. However, this growing concern has yet to be addressed and future research should be done. Therefore, local authorities and professionals should be mindful regarding time sensitivity allocated for parental consultation. It was additionally indicated by Farrell et al. (2006) that alternative providers could take on the work of an EP to reduce the caseload. This way, EPs could allocate more time for valuable and productive consultation with parents.
This paper discussed the advantages and disadvantages of inclusion as well as implications and recommendations for professionals working with a child with low-incidence needs. Undoubtedly, opposing views about including the child in the mainstream system will arise. This dilemma of difference allows us to recognize that a different provision might result in stigma and devaluation, but not recognizing the difference can prevent providing adequately for each individual (Norwich, 2002). It is the key role of EPs to provide optimal support and provision that works best for the child and family.
For a wider perspective on this topic, this paper looked into both the context of the United Kingdom and the United States of America. There were several similar standpoints between these two countries, however, further study should focus solely on the UK to get a more in-depth review of the topic. Future research is encouraged to narrow the gap regarding low-incidence condition and develop detailed legislations/guidelines when engaged with this population. It would also be beneficial to research and develop an effective framework to improve a productive relationship between all parties surrounding the child and EPs as facilitators. Lastly, due to the aging demographic profile of EPs, there is an inevitable concern around the future supply of EPs, which has yet to be addressed (MacBeath, Steward, Galton, MacBeath & Page, 2006).
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