Researching Disability and Special Educational Needs :Researching Disability and Special Educational Needs Harry Daniels Jill Porter University of Bath


Review of Research in Learning Difficulties 1990-2000/1 :Review of Research in Learning Difficulties 1990-2000/1 Fall in the amount of research that was published- especially that which related to educational services Little research on inclusion/inclusive practices or the curriculum Surveys & Experimental designs still dominated but the latter were usually small scale (often single subject) Just under a third of research was on the characteristics of children with specific conditions Shifts in terminology with a growing consensus ? disability Newer technologies (e.g. intervention ) and qualitative methods not well reflected in the literature Porter and Lacey 2005


Expectations from the Literature about research in learning difficulties :Expectations from the Literature about research in learning difficulties Experimental designs problematic especially with respect to control groups Concern that too little attention was given to individual differences The need for more “ecological” research (social/cultural circumstances) that was meaningful and relevant to the lives of people with LD Need to develop new technologies especially for evaluation that included the “voice of the user” People with learning difficulties would and could contribute to setting the research agenda


Challenges for Researchers :Challenges for Researchers Size and heterogeneity of population Heterogeneity of provision Complexity of the interaction between these two aspects Access to the population Communication skills of the population Funding and political interests


What Research ? :What Research ? Understand the nature and prevalence of children’s difficulties in the social, cultural and historical context in which they arise Develop theoretical understanding of the nature of those difficulties and the ways they are mediated Generate, test out and evaluate different approaches to intervention with the involvement of “key stakeholders” Inform policy decisions about practice and provision- transform meanings and disseminate research for diverse audiences


How ? :How ? Closing the interface between researcher and researched Participatory forms of research Considered use of mixed methods Intervention research Collaborative networks of researchers


Participatory Research :Participatory Research Voices of All User Groups Co- Researchers Setting the research agenda


Time to Listen :Time to Listen This paper has been written by Lisa, Michelle, Ann, Sarah and Jill with added comments from Gordon and Andrew. This paper has been written by Lisa, Michelle, Ann, Sarah and Jill with added comments from Gordon and Andrew.


Slide 9:The project is to look at how to increase the use of computers for people in the day and residential services provided by HFT (Home Farm Trust). The project involved talking with staff and service-users about their experiences of using computers, watching activities in which computers were being used and running workshops. All these research activities were recorded, either with a tape-recorder or a video recorder or sometimes both.


Slide 10:An important job for the group was to give advice to Sarah, the researcher, on how to communicate with people so that they understood why the research was taking place and that they had a choice of whether to be involved or not.


Government funded research project to investigate Disability Data Collection for Children’s Services :Government funded research project to investigate Disability Data Collection for Children’s Services Duty of schools to monitor the impact of their activities on disabled children and improve outcomes A disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities. The Disability Discrimination Act (DDA) Jill Porter, Jan Georgeson, Harry Daniels, Jayne Hacker, Vicki Gallop University of Bath with Anthony Feiler, Beth Tarleton, Debby Watson, University of Bristol


Aim of the Project :Aim of the Project To develop a basic data collection tool to inform planning and monitoring of the Disability Equality Duty by schools, local authorities and central government employing user friendly approaches to establish: Does the pupil have a disability- in line with the Disability Discrimination Act (DDA) definition ? What type of disability do they have ? What support needs do they have ?


Interactional Model of Disability :Interactional Model of Disability Shakespeare & Watson 2001 “Disability is an interaction between impaired bodies and excluding environments” “ The experience of a disabled person results from the relationship between factors intrinsic to the individual, and extrinsic factors arising from the wider context in which she finds herself. Among the intrinsic issues are factors such as the nature and severity of her impairment, her own attitudes to it, her personal qualities and abilities, and her personality. Among the contextual factors are: the attitudes and reactions of others, the extent to which the environment is enabling or disabling, and wider cultural, social and economic issues relevant to disability n that society.” Shakespeare p55-56


Scoping Study :Scoping Study Research on asking about Impairments (Developmental) Functioning Activities & Participation Barriers & Supports Multiple rather than single indicators


Other Factors :Other Factors Negative sounding terminology Under-representation of certain groups Linking with policy/service categories Professional diagnosis Cyclical or variable- sometimes Motivation Pupil Views


Slide 16:Making Schools Better Places for Learning 7 closed and 3 open questions Experience of difficulties in lessons, in other school activities, with peers and at home (yes/sometimes/no) Asked to describe difficulties child experienced and support they found helpful Asked specifically if the child had a disability or difficulty e.g. anxiety or depression, arthritis, asthma, autism, cancer etc Asked if sometimes absent from school Asked if the condition was longstanding Asked about diagnosis and if they had seen a professional


Slide 17:Overall Impact none ? Mild – occasionally interferes with everyday activities and only in a minor way Moderate – intermittent but regular limitation of normal activities Severe – frequent and significant impact on daily activities Profound – unable to take part in a number of activities Category of Need- e.g. health, communication, behaviour, cognitive and learning


National Trial :National Trial 74 schools nationwide, 10 regions with varying levels of inclusion and statementing, including areas of high level of deprivation, high levels of children with English as a 2nd Language, and one with a high level of private schooling 6994 questionnaires distributed to parents of children aged 5, 8 and 12 in mainstream and special schools. 2 group meetings with schools – induction and evaluation 12 schools visited for validation


Some results from the national trial :Some results from the national trial Return rates 42% (range 10%-80%) N= 2895 2% submitted online 14% ( 390) met the DDA criteria- they had a disability which was longstanding and impacted on daily activities 72% of these (281) experience difficulties in school and classroom learning 47% (184) experience difficulties at home 94% (366) are reported to have seen a professional and 85% gave a diagnosis (asthma autism and ADHD most prevalent) 37% (144) the difficulty sometimes led to absence from school


Validity :Validity ? Missed .2% of children by excluding those whose parents did not tick the longstanding question Where schools disagreed in almost all cases felt parents under-estimated the impact ? Under-reporting of mental health issues- compared to pupils self reports


What Support do parents of disabled children find helpful ? :What Support do parents of disabled children find helpful ? 73% (285) provided qualitative information 22% (64) identified the importance of one to one support, small groups or classes 17% (49) made explicit reference to the need for a particular attitude: encouraging, reassuring, sympathetic, patient, listening, giving confidence. Parents wanted they child to be treated with understanding 17% (49) parents referred to learning particularly to reading and writing 15% (42) made reference to some form of therapy, either speech therapy, physiotherapy or occupational therapy 14% (40) of parents provided an outline of their child’s medical support with almost two thirds of these making specific references to asthma/use of inhalers. • Few parents (.03%) made explicit reference to the child’s peers or friends.


Evaluation :Evaluation More inclusive- only 2 parents wanted a fast track Contradictory comments by a few parent for more specific and for more flexible categories All but .004% parents were happy to share information Access for parents with limited literacy It revealed 95 children with a disability and no SEN There were children with a disability in all 8 visited mainstream schools who they did not know about Absence rates suggest children are vulnerable to underachievement


Implications :Implications Ethos of the school Opening up conversations with all parents Ways in which schools and home mediate the impact of a disability Recognition of importance of using multiple indicators of disability http://www.bath.ac.uk/research/pdes/


Some References :Some References Durkin, M.S., Davidson L. Desai P., Hasan Z., Khan N., Shrout, P. Thornburn M., Wang W & Zarman S. (1994) Validity of the Ten Questions Screen for Childhood Disability: Results from Population-Based Studies in Bangladesh, Jamaica and Pakistan., Epidemiology, 5, 3, 283-289. Florian L., Hollenweger J., Simeonsson R, J. Wedell K., Riddell S., Terzi L., Holland A. (2006) Cross-cultural perspectives on the classification of children with disabilities: Part 1. Issues in the classification of Children with Disabilities. The Journal of Special Education 40, 1 36-45 Green H., McGinnity Meltzer H., Ford, T., Goodman R. (2005) Mental Health of Children and Young People in Great Britain. Summary report. A survey carried out by the Office for National Statistics on behalf of the Department of Health and Scottish Executive. Gudex, C., & Lafortune, G. (2000). An inventory of health and disability related surveys in OECD countries. Joint ECE/WHO Expert Meeting on Health Statistic Measurements, Ottawa, Canada. Working paper No. 6. Hutchison T., & Gordon D., (2005) Ascertaining the prevalence of childhood disability. Child: care health and development, 31, 1 99-107. Langlois R., 2002 Global Measures of Disability Statistics Canada’s experiences so far… Paper presented to the First Meeting of the Washington Group on Disability Measurement, February 18-20 2002. Lewis, A., Robertson, C. and Parsons, S. (2005). Experiences of Disabled Students and their Families. Phase 1. Research report to Disability Rights Commission, June 2005. Birmingham: University of Birmingham, School of Education. http://83.137.212.42/sitearchive/DRC/library/research/education/experiences_of_disabled.html Porter J..Daniels, H. Georgeson J., Feiler A., Hacker J., with Tarleton B., Gallop V., Watson D. (2008) Disability Data Collection for Children’s Services. Nottingham: DCFS


Slide 25:Porter J..Daniels, H. Georgeson J., Feiler A., Hacker J., with Tarleton B., Gallop V., Watson D. (2008) Disability Data Collection for Children’s Services. Nottingham: DCFS Porter J..Daniels, H. Georgeson J., Feiler A., Hacker J., with Tarleton B., Gallop V., Watson D. (submitted for publication) Collecting Disability Data from Parents. Research Papers in Education Purdam, Afkham R., Olsen W., & Thornton P. (2008) Disability in the UK: measuring equality. Disability and Society, 23, 1 53-65. Read J., Spencer N., & Blackburn C. (2007) Can we count them ? Disabled Children and their Households. Full Project Report to the ESRC Award No: Res-000-22-1725. Swindon: ESRC. Rose C., (2006) Do you have a disability- yes or no ? or is there a better way of asking ? London: Learning and Skills Development Agency Shakespeare, T (2005) Disability Rights and Wrongs. London: Routledge Westbrook L.E. Silvere E.J. & Stein R.E. (1998) Implications for Estimates of Disability in Children: A Comparison of definitional Components. Pediatrics 101, 6, 1025-1030. World Health Organisation (2002) International classification of functioning, disability and health. Towards a common language for functioning disability and health. Geneva: WHO Young N.L. Williams J.I. Yoshida K.K. Bombardier C., Wright J.G. (1996) The context of Measuring Disability: Does it Matter whether capability or performance is measured ? Journal of Clinical Epidemiology, 49, 10, 1097-1101