The following resources, some linked with project findings from ‘Gathering feedback and measuring outcomes and change with Children and Young People with Learning Disabilities (CYP-LD)’, are useful for working with children and young people with learning disabilities. These include outcome measures, how-to guides, services, open access research papers and useful tools.
There are also 2 theme-specific tables for:
These signpost ‘curated’ resources and organisations are additional to those in reports and are focused more specifically for those with more complex and substantial needs. It may be useful to link with organisations for signing up for news updates, following blogs and social media, training.
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Type of resource |
Name of resource |
Focus and nature of resource |
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Research paper #OpenAccess |
A child behaviour rating form for children with developmental disabilities |
The Nisonger CBRF appears to be a promising new tool for assessing behavioural and emotional problems in children with developmental disabilities; however, further psychometric work is warranted. Aman, M., Tassé, M., Rojahn, J. and Hammer, D. (1996). The Nisonger CBRF: A child behaviour rating form for children with developmental disabilities. Research in Developmental Disabilities, 17 (1), 41-57. |
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How-to guide |
A Guide to Attachment; How to Create a Positive Future; Looking After Looked After Children useful for issue specific consultations |
Sir John Timpson CBE has written three useful little guide books on Attachment, based on 30 years’ experience as a foster carer – A Guide to Attachment, How to Create a Positive Future and Looking After Looked After Children. The books aim to enlighten foster carers, inform educators and engage the wider public about Attachment using simple, jargon-free language and pictures. https://www.timpson-group.co.uk/alex-timpson-trust/free-books/ |
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Research paper #OpenAccess |
Adapting photovoice to explore identity expression amongst people with intellectual disabilities who have limited or no verbal communication |
Inclusive research requires adapting methodologies to meet the needs of people with all degrees of intellectual disabilities. However, it must also balance this with the requirements of academic research. Building from previous research a study was completed to illustrate how photovoice could not only be adapted to meet the needs of people with intellectual disabilities who have limited or no verbal communication but to also explore how they express their identity. Krisson, E., Qureshi, M. & Head, A. 2020. Adapting photovoice to explore identity expression amongst people with intellectual disabilities who have limited or no verbal communication. Br J Learn Disabil. 2021;00:1–11. |
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Co-produced initiative |
Aneurin Bevan University Health Board, Jeni McElwee |
Co-produced initiative to involve children and young people with learning disabilities of all ages/abilities and families through active participation. Observation framework and guidance. See ‘Hearing the voice’ good practice example summary 7 An observational framework for young people’s participation in interviews. |
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Service/campaign |
Ask, listen, do (NHSE) |
NHSE project about making conversations count across health, education and social care for people with learning disabilities of all ages. Initially rather adult-focused – this project linked with Mary Busk, Family Carer Adviser NHSE and co-founder of the National Network of Parent Carer Forums to encourage more young people involvement and focus. |
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Research paper |
Assessing social and affective outcomes of inclusion |
The systematic assessment of the social and affective outcomes of inclusion has been lagging behind the assessment of academic outcomes. This is particularly problematic in view of research evidence supporting concerns about peer rejection and bullying. In this article, Norah Frederickson and Elizabeth Simmonds, of University College London, and Lynda Evans and Chris Soulsby, from Foxwood Special School, report their evaluation of the social and affective outcomes of a special- mainstream school inclusion initiative that places particular emphasis on peer preparation. Measures completed by pupils were used to assess peer group inclusion, social behaviour, bullying and feelings of belonging at school. Results showed that pupils who had transferred from special to mainstream schools experienced positive social outcomes and none experienced peer group rejection. However, results were less positive for mainstream pupils with special educational needs and the authors discuss possibilities for development. Trends in peer reports of bullying suggest that there is no room for complacency and that ongoing monitoring is required. Frederickson, N., Simmonds, E., Evans, L. & Soulsby, C. (2007). Assessing social and affective outcomes of inclusion. British Journal of Special Education, 34, 105–115. |
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Presentations |
Avon and Wilts Partnership NHS Trust and Bristol Special Schools |
Team Epic, participation group at Claremont School – see presentations from “Our Journey Together: People with Learning Disabilities and Clinical Psychologists in Partnership” conference:
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Useful resources |
British Association of Social Work (BASW) |
Homes not Hospitals, 2021. Co-produced campaign & resources - key element is listening to people (plus families) to get services right in community and prevent admissions. |
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How-to guide Report Useful resources |
Challenging Behaviour Foundation (CBF)
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Co-authors with Mencap of ‘Valuing the views of children with a learning disability; engaging with children and young people with severe or profound and multiple learning disabilities’, which gives examples of how organisations have actively sought and responded to the views of children with severe or profound and multiple learning disabilities in ways that other people can replicate. It tackles misconceptions, signposts further useful information and is aimed at anyone involved in supporting children or young people with learning disabilities including schools, CAMHS and short breaks. It will be of interest to those consulting young people in order to shape future services (including commissioners in SEND and Transforming Care Partnerships.) CB-NSG March 2020 focused on Outcomes – see summary and actions, including:
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Useful resources Research How-to guide |
Council for Disabled Children (CDC) |
Disabled children and young people have the same rights as non-disabled children and young people to participate in decisions and issues that affect them. At CDC, participation informs the way that we work and is an intrinsic part of everything we do. Our vision is that all organisations, agencies and services that affect children and young people will have structures and systems in place to respond to their ideas and priorities, and to work with them to bring about positive change. We believe that by supporting and training professionals in their participation practice and involving children and young people at key stages in our work, we can increase opportunities for participation and make our vision a reality.
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Outcome measure |
DBC (Developmental Behaviour Checklist) |
Developmental Behaviour Checklist The DBC is a suite of instruments for the assessment of behavioural and emotional problems of children, adolescents, and adults with developmental and intellectual disabilities. https://www.corc.uk.net/outcome-experience-measures/developmental-behaviour-checklist-dbc/ |
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Research paper |
Ethnography in the Study of Children and Childhood |
In its literal translation, the term ‘ethnography’ means writing about people and it is the argument of this chapter that it is the use of ethnography as a research methodology which has enabled children to be recognized as people who can be studied in their own right within the social sciences. In this sense ethnographic methods have permitted children to become seen as research participants and, increasingly therefore, it is ethnography which is fast becoming a new orthodoxy in childhood research (see Qvortrup, 2000). In thus detailing this progressive journey, one which has witnessed the shift from children as objects to their being subjects in the research process, this chapter has two aims: first to detail the history and present scope of ethnographic research with children; secondly, to explore along the way the potential which ethnography has unleashed for our contemporary understanding of children’s lives and thus for the study of childhood itself, both inside and outside the academy. In this sense, then, while ethnography may not in the past have been deemed a central methodology in applied or policy oriented social research, the research considered in this chapter demonstrates the appropriateness of its application (Wallman, 1997).1 James, A. 2007 Ethnography in the Study of Children and Childhood. |
| Reports |
Foundation for People with Learning Disabilities |
Long history of hearing the voice on mental health and children and young people with learning disabilities. In 2001, the Foundation for People with Learning Disabilities undertook an inquiry to find out how services, families and carers can meet the mental health needs of people with learning disabilities aged 13 to 25. We know that young people with learning disabilities need to have better mental health services. Making Us Count was a research programme which ran from 2002 to 2005, comprising of four projects that looked to improve mental health support. |
| Useful resources |
Juliet Goldbart, Manchester Metropolitan University |
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Service Research Useful resources |
Intensive Interaction |
Intensive Interaction helps people at early levels of development, with severe, profound or complex learning difficulties and/or autism, develop/enjoy fundamentals of communication. Information, training, videos on web. Improves engagement, can alter staff/carers/peers perceptions of, and interactions with, people and have beneficial effects with challenging behaviour and trauma. |
| Project |
Leicester NHS (If you listen you will hear us) |
SALT-led project to increase communication with, & inclusion of people with more severe impairments. Although more adult-focused, some are young adults and the processes and principles apply across ages. |
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Outcome Measure |
Me and My Feelings School measure. Wellbeing Measurement Framework for Primary Schools. |
Deighton et al. (2013). Me and My Feelings School measure. Wellbeing Measurement Framework for Primary Schools. EBPU/Anna Freud Centre. https://www.corc.uk.net/media/1506/primary-school-measures_310317_forweb.pdf |
| Service |
Me first |
Me First offers themed training modules and resources co-designed by children and young people. They collaboratively develop your skills, enabling you to tackle tough conversations and help children and young people feel valued and understood. When you involve them in the decision-making, you nurture better health outcomes. |
| Report |
My Life at School: Understanding the experiences of children and young people with special educational needs in residential special schools. |
This report is about understanding the experiences of children and young people with special educational needs in residential special schools. All children and young people with SEN and disabilities in residential special schools have preferences and feelings that must be taken into account, and many have strong and clear views about their rights and about the provision needed to protect and enhance them. If we work to understand children’s wishes and feelings, and listen attentively to these views, we will be able to further develop and improve the often excellent provision that residential special schools make to the quality of these children’s lives. Pellicano, L., Hill, V., Croydon, A., Greathead, S., Kenny, L., Yates, R. (2014). My Life at School: Understanding the experiences of children and young people with special educational needs in residential special schools. Office of the Children’s Commissioner. London. |
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Research paper #OpenAccess |
Nick Gore, clinical psychologist and Jill Bradshaw, SALT/Talking Mats trainer, Tizard, University of Kent |
Gore, Nick J. and McGill, Peter (2019) Making it Meaningful: Caregiver Goal Selection in Positive Behavioral Support. Journal of Child and Family Studies, online (online). pp. 1-10. ISSN 1062-1024. Gore, N.J., McGill, P. & Hastings, R.P. (2021) Personalized Goals for Positive Behavioral Support: Engaging Directly with Children who have Intellectual and Developmental Disabilities. Journal of Child and Family Studies https://doi.org/10.1007/s10826-020-01867-2 |
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Outcome Measure |
Nisonger Child Behavior Rating Form (NCBRF) Parent and Teacher versions |
The Nisonger Child Behavior Rating Form (NCBRF) is an instrument designed to assess the behavior of children with intellectual disability (ID), autism spectrum disorder (ASD), and related neurodevelopmental disorders (ND). The NCBRF contains a total of 76 items: 10 items on two Positive/Social subscales and 66 items on six Problem Behavior subscales. The NCBRF is made up of two sections: (1) A Likert-type rating of the child’s Positive/Social Behaviors in the last month and (2) a rating of severity of the problem the challenging behavior was in the last month. There are two separate NCBRF forms: (a) Parent Form and (b) Teacher Form which can be completed and scored independently. The NCBRF is completed directly by the parent/caregiver and teacher and takes approximately 15 minutes to complete. The NCBRF is designed to be used with children and adolescents ages 3 to 16 years. Several research studies have found the NCBRF to be a reliable and valid measure in the assessment of problem behavior in children and adolescents with ID, ASD, and ND. https://nisonger.osu.edu/nisonger-child-behavior-rating-form/ 1. Nisonger Child Behaviour Rating Form (Parent) |
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Report |
Office of the Children’s Commissioner |
'They still need to listen more': A report about disabled children and young people’s rights in England. |
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Useful resources |
Open storytellers, Nicola Grove |
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Service |
PAMIS |
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Useful resources |
Picture Exchange Communication System (PECs) |
PECS is a unique alternative/augmentative communication system developed in the USA in 1985 by Andy Bondy, PhD, and Lori Frost, MS, CCC-SLP. PECS was first implemented with pre-school students diagnosed with autism at the Delaware Autism Program. Since then, PECS has successfully been implemented worldwide with thousands of learners of all ages who have various cognitive, physical and communication challenges. |
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Useful resources |
PMLD Link |
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Research paper |
Protecting Adolescents from Harm: Findings from the National Longitudinal Study on Adolescent Health |
The main threats to adolescents' health are the risk behaviors they choose. How their social context shapes their behaviors is poorly understood. To identify risk and protective factors at the family, school, and individual levels as they relate to 4 domains of adolescent health and morbidity: emotional health, violence, substance use, and sexuality. Resnick, M. D., P. S. Bearman, R. W. Blum, K. E. Bauman, K. M. Harris, J. Jones, J. Tabor, et al. 1997. “Protecting Adolescents from Harm: Findings from the National Longitudinal Study on Adolescent Health.” JAMA 278 (10): 823–832 |
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Research paper #OpenAccess |
Research methods for children with multiple needs: Developing techniques to facilitate all children and young people to have 'a voice'. |
This study aimed to investigate the experiences of children and young people being educated in residential special schools, with a particular focus on how their rights and wellbeing were being promoted by their schools. The findings indicated that the techniques developed during this study helped to provide insight into the experiences of pupils with a wide range of special needs, and facilitated their voices. The piloting of a method that integrated ethnographic observation techniques with checklists adopted from the SCERTS framework (developed by Prizant and colleagues) provided important insights into the experiences and preferences of children with the greatest learning and communication needs, and is an approach worthy of further development. Hill, V., Croydon, A., Greathead, S., Kenny, L., Yates, R., & Pellicano, E. (2016). Research methods for children with multiple needs: Developing techniques to facilitate all children and young people to have 'a voice'. Educational and Child Psychology. 33. |
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Book |
The SCERTS® Model: A Comprehensive Educational Approach for Children with Autism Spectrum Disorders. Brookes Publishing |
With this first book of the two-volume SCERTS™ manual, professionals get practical guidance on using SCERTS™ to assess the communication and social-emotional abilities of preschool and elementary school children with autism spectrum disorders (ASD). Special and general educators, speech-language pathologists, occupational therapists, psychologists, and social workers will: learn about the research foundations of the model; examine objectives for each of the three domains; discover how to use the model in educational, home, and community settings; and get a complete guide to the SCERTS™ Assessment Process, with photocopiable forms for collecting information and monitoring progress. Prizant, B.M., Wetherby, A.M., Rubin, E., A.C., Rydell, P.J. (2006) The SCERTS® Model: A Comprehensive Educational Approach for Children with Autism Spectrum Disorders. Brookes Publishing |
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Research paper |
‘School for Everyone’: An exploration of children and young people’s perceptions of belonging. |
Research suggests that children’s sense of belonging has significant implications for schools, as it is likely to be positively associated with important outcomes such as engagement with learning, mental health and happiness. A two phase project was delivered using exploratory and emancipatory mixed-methods with 84 children and young people, aged 3 to 16 with a range of SEND. Young people’s sense of belonging was collected using the Belonging Scale and School Connectedness Scale, alongside individual or semi-structured group reflection sessions, which allowed for a detailed understanding of participant perspectives. Four key themes were identified as important in supporting children’s sense of belonging in school: Relationships, School Environment, Teaching and Learning and Extra Curricular Activities. Children and young people also ranked the emerging themes to create a list of Top Ten tips for inclusion and belonging. Midgen et al. (2019). ‘School for Everyone’: An exploration of children and young people’s perceptions of belonging. Education and Child Psychology 36 (2), 9-22. |
| Outcome measure |
SLDOM (Sheffield Learning Disabilities Outcome Measure) |
The Sheffield Learning Disability Outcome Measure (SLDOM) is a measure of parents’ perception of their child’s symptoms and their ability to cope with their child’s symptoms. |
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Report |
Speak up |
Speakup is run by and for people with learning disabilities and autistic people. Speakup gives people with learning disabilities and autistic people a voice, employment opportunities and makes sure that they are valued and included in society. Speakup & Sheffield Sparkle project ‘Listening to Seldom Heard Voices’ (NHSE funded) to hear what they think about health inequalities, reducing inpatient numbers and developing new service frameworks for children and young people -key working & intensive community support. |
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Research paper |
Supporting Children With Severe-to-Profound Learning Difficulties and Complex Communication Needs to Make Their Views Known: Observation Tools and Methods. |
All children have the right to shape decisions that influence their lives. Yet, children with severe-to-profound intellectual disabilities and complex communication needs are often marginalized from this process. Here, we examined the utility of a set of tools incorporating ethnographic and structured observational methods with three such children. We specifically examined the communicative behavior that these children used to share their views and the ways in which adults recognized and responded to them. Greathead, S., Yates, R., Hill, V., Kenny, L., Croydon, A., & Pellicano, E. (2016). Supporting Children With Severe-to-Profound Learning Difficulties and Complex Communication Needs to Make Their Views Known: Observation Tools and Methods. Topics in Language Disorders. 36. 217-244. |
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Useful resources Research |
Talking Mats |
Talking Mats is a social enterprise whose vision is to improve the lives of people with communication difficulties, and those close to them, by increasing their capacity to communicate effectively about things that matter to them. The award-winning Talking Mats communication symbols tool is based on extensive research and designed by Speech and Language Therapists. It uses unique, specially designed picture communication symbols that are attractive to all ages and communication abilities and is used by clinical practitioners, carers and support workers in a wide range of health, social work, residential and education settings.
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Useful resources |
Tools for Talking |
Tools co-developed with people with learning disabilities to support exploring and understanding issues around diversity, culture, beliefs and people. Can be used with people with learning disabilities, their families and networks. Though developed with adults, the framework and materials could be used with younger ages. https://toolsfortalking.wordpress.com/ Videos and resources to help discussions around ‘My Culture and what it means to me’; ‘Important People in my life and my relationships with them’; ‘Things I do now and things I would like to do’. |
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Service Useful resources Research |
Triangle |
An independent organisation with over 20 years’ experience, enabling children and young people, especially those with complex needs, from very young up to age 30, to communicate about important things, especially in legal proceedings. Their “vision is to reposition children and young people in society as competent communicators and active agents in their own lives”. They provide advocacy, consultation, expert opinion, intermediary services, investigative interviewing, research, resources (some downloadable free from web), specialist support, therapy, training. https://www.triangle.org.uk/ There are videos, resources, papers, including:
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Research paper |
Using photovoice to include people with profound and multiple learning disabilities in inclusive research. |
It is now expected that projects addressing the lives of people with learning disabilities include people with learning disabilities in the research process. In the past, such research often excluded people with learning disabilities, favouring the opinions of family members, carers and professionals. The inclusion of the voices of people with learning disabilities is a welcome and much needed change. While there has been many valuable inclusive researches carried out in the past 10–15 years, much of this research has included people with mild and/or moderate learning disabilities. Far less published research has included people with profound and multiple learning disabilities. |
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Research paper |
Ways of seeing: using the Mosaic approach to listen to young children’s perspectives. |
How can young children’s perspectives become the focus for an exchange of meanings between children, practitioners, parents and researchers? In this chapter, Alison Clark explores how the Mosaic approach provides a way of facilitating such exchanges. Starting from the viewpoint of young children as competent meaning makers and explorers of their environment, the Mosaic approach brings together a range of methods for listening to young children about their lives. The chapter explores this approaching the context of involving young children in changes to an outdoor play area. Wider questions are raised about adult–child power relations and the status of young children.
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Research paper |
What does belonging mean for young people who are International New Arrivals? |
A sense of belonging is a complex process which can play a crucial part in the emotional well-being and academic success of young people. When pupils do not feel a sense of belonging at school, motivation, engagement, academic achievement and attendance are all at risk. International New Arrivals (INA) may find the process of adjusting to a new culture and developing a sense of belonging in school challenging. The current research sought to understand the development of belonging from the perspective of INA young people. Five INA pupils from two high schools participated in semi-structured interviews. The findings illustrate that a sense of belonging involves a complex interaction between many factors. |
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Service |
Widgit |
Widgit Symbols are used worldwide to support people and help them realise their full potential, no matter what their age, ability or background. |