The inequity of education, health and care plan provision for children and young people with intellectual and developmental disabilities.
education
health and care plan
index of multiple deprivation
inequity
intellectual and developmental disability
regions of England
socioeconomic status
Journal
Journal of intellectual disability research : JIDR
ISSN: 1365-2788
Titre abrégé: J Intellect Disabil Res
Pays: England
ID NLM: 9206090
Informations de publication
Date de publication:
22 May 2024
22 May 2024
Historique:
revised:
07
03
2024
received:
19
10
2023
accepted:
13
03
2024
medline:
23
5
2024
pubmed:
23
5
2024
entrez:
22
5
2024
Statut:
aheadofprint
Résumé
Children and young people (CYP) with intellectual and developmental disabilities (IDDs) have significant additional educational needs compared with the general population. In England, the government has established a system of education, health and care plans (EHCPs) to support children with special educational needs and disabilities, but disparities exist between the degree of need and the availability of support. We conducted a prospective UK national cohort study (IMAGINE) of children with rare pathogenic genomic variants, all of which are associated with IDD, to investigate associated neuropsychiatric risk. Subsequently, we obtained information from the UK's National Pupil Database on their educational progress through the state school system. We aimed to identify whether they had received EHCP provision and whether that support was associated with their family's socioeconomic status, region of domicile, ethnicity, sex, primary special educational needs (SEN) type, academic performance and mental health well-being. We recruited 2738 CYP from England into the IMAGINE study between 2014 and 2019. The educational histories of the participants (6-28 years old, mean ± standard deviation = 14 ± 4 years, 56% male) were obtained from the Department for Education's National Pupil Database in 2021. Educational data included attainment scores from the Early Year Foundation Stage (<5 years) to key stage 4 (15-16 years). Each family was assigned an index of multiple deprivation (IMD) score based on their home address postcode. Parents or carers rated their child's emotional and behavioural adjustment on the Strengths and Difficulties Questionnaire (SDQ). The association between receiving an EHCP and the child's IMD score, eligibility for free school meals, English region of domicile, ethnicity, sex, primary SEN type, academic attainment and SDQ score was investigated. In this cohort, 78% of participants had received an EHCP. CYP living in the most deprived IMD deciles were substantially less likely to receive EHCP support than those in the least deprived decile, irrespective of their degree of intellectual developmental disability, academic performance or associated mental health problems. There were no sex differences. Children of Asian heritage were more likely to have been granted an EHCP than White children from equivalent IMD deciles. There were striking regional disparities. Participants living in London were significantly more likely to have been awarded an EHCP than participants living anywhere else in England, regardless of their IMD decile; those in the least deprived decile had almost 100% EHCP provision. This study found evidence for nationwide regional inconsistencies in the awarding of EHCP to CYP with significant intellectual impairments of known genetic aetiology. Disparities in funds available to education authorities could be a contributory factor. EHCP support was potentially influenced by how strongly a parent advocates for their child.
Sections du résumé
BACKGROUND
BACKGROUND
Children and young people (CYP) with intellectual and developmental disabilities (IDDs) have significant additional educational needs compared with the general population. In England, the government has established a system of education, health and care plans (EHCPs) to support children with special educational needs and disabilities, but disparities exist between the degree of need and the availability of support. We conducted a prospective UK national cohort study (IMAGINE) of children with rare pathogenic genomic variants, all of which are associated with IDD, to investigate associated neuropsychiatric risk. Subsequently, we obtained information from the UK's National Pupil Database on their educational progress through the state school system. We aimed to identify whether they had received EHCP provision and whether that support was associated with their family's socioeconomic status, region of domicile, ethnicity, sex, primary special educational needs (SEN) type, academic performance and mental health well-being.
METHODS
METHODS
We recruited 2738 CYP from England into the IMAGINE study between 2014 and 2019. The educational histories of the participants (6-28 years old, mean ± standard deviation = 14 ± 4 years, 56% male) were obtained from the Department for Education's National Pupil Database in 2021. Educational data included attainment scores from the Early Year Foundation Stage (<5 years) to key stage 4 (15-16 years). Each family was assigned an index of multiple deprivation (IMD) score based on their home address postcode. Parents or carers rated their child's emotional and behavioural adjustment on the Strengths and Difficulties Questionnaire (SDQ). The association between receiving an EHCP and the child's IMD score, eligibility for free school meals, English region of domicile, ethnicity, sex, primary SEN type, academic attainment and SDQ score was investigated.
RESULTS
RESULTS
In this cohort, 78% of participants had received an EHCP. CYP living in the most deprived IMD deciles were substantially less likely to receive EHCP support than those in the least deprived decile, irrespective of their degree of intellectual developmental disability, academic performance or associated mental health problems. There were no sex differences. Children of Asian heritage were more likely to have been granted an EHCP than White children from equivalent IMD deciles. There were striking regional disparities. Participants living in London were significantly more likely to have been awarded an EHCP than participants living anywhere else in England, regardless of their IMD decile; those in the least deprived decile had almost 100% EHCP provision.
CONCLUSIONS
CONCLUSIONS
This study found evidence for nationwide regional inconsistencies in the awarding of EHCP to CYP with significant intellectual impairments of known genetic aetiology. Disparities in funds available to education authorities could be a contributory factor. EHCP support was potentially influenced by how strongly a parent advocates for their child.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Subventions
Organisme : UK Medical Research Council
Informations de copyright
© 2024 The Authors. Journal of Intellectual Disability Research published by John Wiley & Sons and MENCAP.
Références
Adlington K., Smith J., Crabtree J., Win S., Rennie J., Khodatars K. et al. (2019) Improving access to genetic testing for adults with intellectual disability: a literature review and lessons from a quality improvement project in East London. American Journal of Medical Genetics. Part B, Neuropsychiatric Genetics 180, 566–575.
Anders J. & Henderson M. (2019) Socioeconomic inequality and student outcomes in English schools. In: Socioeconomic Inequality and Student Outcomes – National Trends, Policies, and Practices, Education Policy & Social Inequality (eds L. Volante, S. Schnepf, J. Jerrim & D. Klinger), pp. 41–62. Springer.
Atkinson A. L., Hill L. J. B., Pettinger K. J., Wright J., Hart A. R., Dickerson J. et al. (2022) Can holistic school readiness evaluations predict academic achievement and special educational needs status? Evidence from the Early Years Foundation Stage Profile. Learning and Instruction 77, 101537.
Conner H., Tyers C., Modood T. & Hillage J. (2004) Why the Difference? A Closer Look at Higher Education Minority Ethnic Students and Graduates (Research Report RR552). DfES Publications, Nottingham.
Crawford C. & Greaves E. (2015) Socio‐economic, ethnic and gender differences in HE participation. Business Innovation & Skills Research Paper No. 186. UK Department for Business Innovation & Skills, London, UK. Available at: https://discovery.ucl.ac.uk/id/eprint/10159876/1/BIS‐15‐85‐socio‐economic‐ethnic‐and‐gender‐differences.pdf
Croll P. (2002) Social deprivation, school‐level achievement and special educational needs. Educational Research 44, 43–53.
Davis L. (2012) Children and equality – equality evidence relating to children and young people in England. Office of the Children's Commissioner. Available at: www.childrenscommissioner.gov.uk
Einfeld S. & Emerson E. (2008) Rutter's Child and Adolescent Psychiatry. Blackwell.
Emerson E. (2012) Deprivation, ethnicity and the prevalence of intellectual and developmental disabilities. Journal of Epidemiology and Community Health 66, 218–224.
Emerson E. & Hatton C. (2007) Mental health of children and adolescents with intellectual disabilities in Britain. The British Journal of Psychiatry 191, 493–499.
Goodman A. & Goodman R. (2009) Strengths and Difficulties Questionnaire as a dimensional measure of child mental health. Journal of the American Academy of Child and Adolescent Psychiatry 48, 400–403.
Goodman R. (1997) The Strengths and Difficulties Questionnaire: a research note. Journal of Child Psychology and Psychiatry 38, 581–586.
Goodman R. (2001) Psychometric properties of the Strengths and Difficulties Questionnaire. Journal of the American Academy of Child and Adolescent Psychiatry 40, 1337–1345.
Green R., Collingwood A. & Ross A. (2010) Characteristics of bullying victims in schools. Available at: https://www.education.gov.uk/publications/eOrderingDownload/DFE‐RR001.pdf
House of Commons, U.K. (2020) Support for children with special educational needs and disabilities: first report of Session 2019–21. House of Commons, London, UK. Available at: https://publications.parliament.uk/pa/cm5801/cmselect/cmpubacc/85/85.pdf
Hughes‐McCormack L. A., Rydzewska E., Henderson A., MacIntyre C., Rintoul J. & Cooper S. A. (2017) Prevalence of mental health conditions and relationship with general health in a whole‐country population of people with intellectual disabilities compared with the general population. BJPsych Open 3, 243–248.
Hutchinson J., Reader M. & Akhal A. (2020) Education in England: Annual Report 2020. Education Policy Institute.
Ilyas M., Mir A., Efthymiou S. & Houlden H. (2020) The genetics of intellectual disability: advancing technology and gene editing. F1000Research 9, 22.
Laxton S., Moriarty C., Sapiets S. J., Hastings R. P. & Totsika V. (2024) Neighbourhood deprivation and access to early intervention and support for families of children with intellectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities 21, 1–10.
Lőrinc M., Ryan L., D'Angelo A. & Kaye N. (2020) De‐individualising the ‘NEET problem’: an ecological systems analysis. European Educational Research Journal 19, 412–427.
Maguire R., Wilson A. & Jahoda A. (2018) Talking about learning disability: promoting positive perceptions of people with intellectual disabilities in Scottish schools. International Journal of Developmental Disabilities 65, 257–264.
Marsh A. J. & Howatson K. (2020) Education, health and care plans and tribunals in England: a statistical tale from 2019. British Educational Research Journal 46, 574–592.
Mon‐Williams M. & Wood M. L. (2023) Addressing education and health inequity: perspectives from the North of England. A report prepared for the Child of the North All‐Party Parliamentary Group.
Murray C. A., Hastings R. P. & Totsika V. (2020) Clinical utility of the parent‐reported Strengths and Difficulties Questionnaire as a screen for emotional and behavioural difficulties in children and adolescents with intellectual disability. The British Journal of Psychiatry 218, 323–325.
Nair R., Chen M., Dutt A. S., Hagopian L., Singh A. & Du M. (2022) Significant regional inequalities in the prevalence of intellectual disability and trends from 1990 to 2019: a systematic analysis of GBD 2019. Epidemiology and Psychiatric Sciences 31, e91.
Naylor P. B., Walters S., Dawson J., Digby T. & Emerson E. (2012) Prevalence of bullying in secondary school by SEN type: analysis of combined NPD and LSYPE data files. ESRC End of Award Report, RES‐000‐22‐3801. Swindon: ESRC.
Office for National Statistics (2022) Population and household estimates, England and Wales: Census 2021. Office for National Statistics (ONS), UK Government. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/bulletins/populationandhouseholdestimatesenglandandwales/census2021
Organisation for Economic Co‐operation and Development (2018) Education at a Glance 2018: OECD Indicators. OECD Publishing.
Parker C., Marlow R., Kastner M., May F., Mitrofan O., Henley W. et al. (2016) The “Supporting Kids, Avoiding Problems” (SKIP) study: relationships between school exclusion, psychopathology, development and attainment – a case control study. Journal of Children's Services 11, 91–110.
Richards H. (2022) “It was tough making sure it happened”: SENCo experience of the reality and risk of education and health care plan implementation. Educational Review 76, 1–22.
Siddiqua A., Duku E., Georgiades K., Mesterman R. & Janus M. (2020) Association between neighbourhood socioeconomic status and developmental vulnerability of kindergarten children with autism spectrum disorder: a population level study. SSM – Population Health 12, 100662.
Terapia (2020) Scoring Strengths and Difficulties Questionnaire for age 4–17 or 18+. Available at: https://terapia.co.uk/wp‐content/uploads/2020/05/SDQ‐scoring_Instructions_4‐18‐years.pdf
UK Department for Education (2016) Revised GCSE and equivalent results in England, 2014 to 2015. UK Department for Education. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/494073/SFR01_2016.pdf
UK Government (2021) Children and Families Act 2014. UK Government. Available at: https://www.legislation.gov.uk/ukpga/2014/6/contents
UK Government (2022a) Children with special educational needs and disabilities (SEND) – if your child got support before September 2014. UK Government. Available at: https://www.gov.uk/children‐with‐special‐educational‐needs/support‐before‐september‐2014
UK Government (2022b) Guide to GCSE results for England, summer 2022. UK Government. Available at: https://www.gov.uk/government/news/guide‐to‐gcse‐results‐for‐england‐summer‐2022
UK Government (2022c) Schools, pupils and their characteristics: academic year 2021/22. The UK Statistics Authority. Available at: https://explore‐education‐statistics.service.gov.uk/find‐statistics/school‐pupils‐and‐their‐characteristics
UK Government (2023a) Children with special educational needs and disabilities (SEND). UK Government. Available at: https://explore‐education‐statistics.service.gov.uk/find‐statistics/special‐educational‐needs‐in‐england
UK Government (2023b) Children with special educational needs and disabilities (SEND) – extra help. UK Government. Available at: https://www.gov.uk/children‐with‐special‐educational‐needs/extra‐SEN‐help
Wearmouth J. (2022) Special Educational Needs and Disability: The Basics, 4th edn. Routledge.
Wood M. L., Gunning L., Relins S., Sohal K., Wright J., Mon‐Williams M. et al. (2024) Potential for England's statutory school entry assessment to identify special educational needs and reveal structural inequalities: a population‐based study. Archives of Disease in Childhood 109, 52–57.
Wolstencroft J., Wicks F., Srinivasan R., Wynn S., Ford T., Baker K. et al. (2022) Neuropsychiatric risk in children with intellectual disability of genetic origin: IMAGINE, a UK national cohort study. The Lancet Psychiatry 9, 715–724.
Wright B., Mon‐Williams M., Kelly B., Williams S., Sims D., Mushtaq F. et al. (2019) Investigating the association between Early Years Foundation Stage Profile scores and subsequent diagnosis of an autism spectrum disorder: a retrospective study of linked healthcare and education data. BMJ Paediatrics Open 3, e000483.