The report by Dr. Marilena Korkodilos discusses the prevalence and impact of disabilities among children and young people in London, emphasizing the inequalities faced by these families. It aims to inform organizations about effective support and intervention strategies to improve the quality of life for affected children and their families. Key areas include various disabilities such as cerebral palsy, ADHD, and autism, along with recommendations for prevention and management.

1. Disabilities in children and
young people in London
Dr Marilena Korkodilos
September 2017

2. Aims 3
Facts about disabilities in children and young people (CYP) 4
Inequalities faced by families of CYP with disabilities 6
Prevention of disabilities in CYP 9
CYP with physical disabilities
Cerebral palsy 10
Hearing impairment 11
Vision impairment 12
Conditions that may be associated with learning disabilities in CYP
Statistics about CYP with learning disabilities in London 13
ADHD 14
Autism spectrum disorder 15
Global developmental delay 16
Speech, language and communication needs 17
Useful resources 18
References 19
Acknowledgements 28
Contents
2

3. 3
Aims
“I don’t have a dis-ability, I have a different-ability”
Robert M. Hensel
Children and young people (CYP) who have a disability should be supported to
enjoy their human rights and reach their full potential in education and in the
community. However, they are more likely to experience adverse outcomes: they
are more likely to live in poverty, to have fewer educational qualifications, to be
unemployed, to have poorer health outcomes and to experience prejudice and
abuse. This does not have to be the case, the right support and early intervention
can significantly improve the quality of life of CYP and their families
The purpose of this report is to:
• Summarise facts about key disabilities in CYP in London, including
epidemiology, risk factors, costs, impact and support
• Provide a resource to support organisations in commissioning decisions to
ensure that each child or young person with a disability is able to function to
the best of their ability
Photo credit: https://pixabay.com/

4. 4
Facts about disabilities in CYP

5. 5
Risk factors for disability in CYP

6. 6
Disadvantage in families of disabled CYP

7. 7
Additional expenditure for families

8. 8
Inequalities for CYP with learning disabilities

9. 9
Prevention of disabilities in CYP

10. 10
Cerebral palsy

11. 11
Hearing impairment

12. 12
Vision impairment

13. 13
CYP with learning disabilities

14. 14
ADHD

15. 15
Autism spectrum disorder

16. 16
Global developmental delay

17. 17
Speech, language and communication needs

18. • Action cerebral palsy https://www.actioncp.org/
• Action for kids https://www.actionforkids.org/
• Afasic (voice for life) http://www.afasic.org.uk
• Council for disabled children https://councilfordisabledchildren.org.uk
• Contact a family http://www.cafamily.org.uk
• I CAN (children’s communication) http://www.ican.org.uk
• MENCAP https://www.mencap.org.uk/
• National development team for inclusion https://www.ndti.org.uk/our-work/our-projects/peoples-health/improving-health-and-lives-
ihal
• Royal College of Psychiatrists
http://www.rcpsych.ac.uk/healthadvice/parentsandyouthinfo/parentscarers/generallearningdisability.aspx
• Royal National Institute for the Blind https://www.rnib.org.uk
• Royal College of Speech and Language Therapists https://www.rcslt.org
• Scope https://www.scope.org.uk/
• The disabilities trust http://www.thedtgroup.org/
• The national autistic society http://www.autism.org.uk
• The Prince’s Trust (includes a link of resources) https://www.princes-trust.org.uk/help-for-young-people/who-else/housing-health-
wellbeing/wellbeing/disabilities
• The Snowden Trust https://www.snowdontrust.org/
• Vision 2020 UK http://www.vision2020uk.org.uk
• Whizz kidz http://www.whizz-kidz.org.uk/
18
Useful resources

19. Page 3
The United Nations Convention on the Rights of People with Disabilities (2007)
Page 4
Disability definition
Equality Act (2010)
London data (Number of children aged 0-16 years in 2017 (1,910.705)) from GLA Interim 2015 Round Population Projections
https://data.london.gov.uk/demography/population-projections/
Disability statistics
Papworth Trust (2016) Disability in the United Kingdom 2016
Page 5
Department of Health (2013) Our children deserve better: Prevention pays
Page 6
Papworth Trust (2016) Disability in the United Kingdom 2016
Page 7
Contact a Family (2012) Counting the Costs 2012: The Financial reality for families with disabled children across the UK
19
References

20. Page 8
Public Health England (2015) The determinants of health inequities experienced by children with learning disabilities
Page 9
Department of Health (2013) Our children deserve better: Prevention pays
Page 10
• Prevalence of cerebral palsy
NICE (2017) Cerebral palsy in under 25s: assessment and management
https://www.nice.org.uk/guidance/ng62/chapter/Recommendations
• Causes of and risk factors for cerebral palsy
https://www.scope.org.uk/support/families/diagnosis/cerebral-palsy
• Impact of cerebral palsy
Hutton J, Hemming K and the UKCP (2006) Life expectancy of children with cerebral palsy
http://www2.warwick.ac.uk/fac/sci/statistics/staff/academic-research/hutton/scope4.pdf
https://thepacecentre.org/information-centre/stats-facts/
https://worldcpday.org/wp-content/uploads/tools/worldcpday.org.au/posters/presentations/What_is_CP_slide_deck_2017.pdf
• Costs of cerebral palsy
Leal J, Wordsworth S, Petrou S (2008) Estimating the hospital cost of cerebral palsy during the first 10 years of life
Centers for Disease Control and Prevention. Economic costs associated with mental retardation, cerebral palsy, hearing loss, and
vision impairment - United States, 2003. MMWR 2004; 53:57-9
20
References

21. Page 10
• Management and support of CYP with cerebral palsy
NICE (2017) Cerebral palsy in under 25s: assessment and management
https://www.nice.org.uk/guidance/ng62/chapter/Recommendations
Surrey County Council (2009) Pre-school children with special or additional needs
Page 11
• Prevalence of hearing impairment
NHS England (2015) Action plan on hearing loss
• Risk factors for hearing impairment
WHO (2016) Childhood hearing loss: Act now, here’s how
• Costs of hearing impairment to the economy and healthcare
NHS England (2015) Action plan on hearing loss
• Costs of hearing impairment to education
Grosse SD Volta Voices 2007;14(6):38-40 Education cost savings from early detection of hearing loss: New findings
• Societal costs of hearing impairment
Mohr PH, Feldmann JJ et al. Int J Technol Assess Health Care 2000 16(4): 1120-35 The societal costs of severe to profound
hearing loss in the United States
• Impact of hearing impairment
NHS England (2015) Action plan on hearing loss
21
References

22. Page 11
• Actions to manage and support CYP with hearing impairment
http://www.who.int/pbd/deafness/world-hearing-day/WHD2016_Infographic_EN.pdf?ua=1
Page 12
• Prevalence of vision impairment
RNIB (2015) Key facts about vision impairment in children and young people
RNIB (2016) RNIB evidence based review - Children and young people England
London data (Number of children aged 0-18 years in 2017 (2,100,753)) from GLA Interim 2015 Round Population Projections
https://data.london.gov.uk/demography/population-projections/
• Risk factors for vision impairment
RNIB (2016) RNIB evidence based review - Children and young people England
Rahi J, Dezateaux C Arch Dis Child 1998; 78: 381-386 Epidemiology of visual impairment in Britain
• Costs of vision impairment
RNIB (2004) The cost of sight loss in the UK: Campaign report 23
RNIB Scotland (2010) The cost of sight loss Scotland: 2010 - 2020
• Estimated additional cost of providing education
RNIB (2004) The cost of sight loss in the UK: Campaign report 23
• 2 out of 5 local authority vision impairment services are unable to meet the needs of at least one group of CYP
RNIB (2013)
Sight loss UK 2013 - The latest evidence
22
References

23. Page 12
• Impact of vision impairment
Rahi J, Dezateaux C Arch Dis Child 1998; 78: 381-386 Epidemiology of visual impairment in Britain
VISION 2020 UK - Pathway for Children and Young People (0 to 25 years) with Vision Impairment, and their Families
• Actions to manage and support CYP with vision impairment
Gilbert C BMJ. 2003 327(7418): 760-761 Blindness in children
RNIB (2016) Protecting specialist services for children with vision impairment
Page 13
https://fingertips.phe.org.uk/profile/learning-
disabilities/data#page/3/gid/1938132702/pat/6/par/E12000007/ati/102/are/E09000002/iid/92135/age/217/sex/4
Page 14
• Prevalence of ADHD
ONS (2005) Mental health of children and young people in Great Britain, 2004 (Table 4.1)
London data (Number of children aged 5-16 years in 2017 (1,287,416)) from GLA Interim 2015 Round Population Projections
https://data.london.gov.uk/demography/population-projections/
• ADHD prevalence, risk factors and outcomes
Centre for Mental Health (2015) Investing in children’s mental health
• Estimated annual UK costs associated with ADHD in adolescents
Telford C, Green C, Logan S, et al. Estimating the costs of ongoing care for adolescents with attention-deficit hyperactivity
disorder. Soc Psychiatry Psychiatr Epidemiol 2013; 48: 337-344
23
References

24. Page 14
• Long term costs of ADHD
Mental Health (2014) The lifetime costs of attention deficit hyperactivity disorder
• Actions to manage and support CYP with ADHD
Department for Education (2016) Mental health and behaviour in schools: Departmental advice for school staff
NICE guidelines (2016) Attention deficit hyperactivity disorder: diagnosis and management
Page 15
• Definition of Autism Spectrum Disorders (ASD)
NICE Eyes on Evidence (2015) Cost of autism spectrum disorders
• Prevalence of autism
https://fingertips.phe.org.uk/search/autism#page/3/gid/1/pat/6/par/E12000007/ati/102/are/E09000002/iid/90906/age/217/sex/4
• Risk factors for ASD
National Collaborating Centre for Women’s and Children’s Health (2011) Autism: recognition, referral and diagnosis of children and
young people on the autism spectrum
http://www.nhs.uk/Conditions/Autistic-spectrum-disorder/Pages/Introduction.aspx
http://www.nhs.uk/Conditions/Autistic-spectrum-disorder/Pages/Causes.aspx
• Costs of ASD
NICE Eyes on Evidence (2015) Cost of autism spectrum disorders
24
References

25. Page 15
• Impact of ASD
http://bestpractice.bmj.com/best-practice/monograph/379/follow-up/prognosis.html
Aspirations and outcomes for people with autism spectrum disorders in emerging adulthood Zoe Huntley D.Clin.Psy thesis
(Volume 1), 2013 University College London
• Actions to manage and support CYP with ASD
National Collaborating Centre for Women’s and Children’s Health (2011) Autism: recognition, referral and diagnosis of children and
young people on the autism spectrum
NICE Clinical guideline 170 (2013) Autism spectrum disorder in under 19s: support and management
Page 16
• Diagnosis and causes of global developmental delay
Walters A Paediatric Neurology 2010:10;32-34 Developmental delay - Causes and investigation
American Academy of Pediatrics Pediatrics 2014:134;e903 - e918 Comprehensive evaluation of the child with intellectual disability
or global developmental delay
London data (Number of children aged 0-4 years in 2017 (623,289)) from GLA Interim 2015 Round Population Projections
https://data.london.gov.uk/demography/population-projections/
25
References

26. Page 16
• Actions to manage and support children with global developmental delay
PHG Foundation (2014) A parent’s guide to the investigation of intellectual disability / developmental delay in children
http://www.phgfoundation.org/file/16328/
Shevell M Clinical Evaluation of the child with developmental delay - State of the art
http://www.spnd-spp.com/download/michael_shevell.pdf
Surrey County Council (2009) Pre-school children with special or additional needs
Page 17
• Prevalence of speech, language and communication needs
Norbury, C. F., Gooch, D., Wray, C., Baird, G., Charman, T., Simonoff, E., Vamvakas, G. and Pickles, A. (2016), The impact of
nonverbal ability on prevalence and clinical presentation of language disorder: evidence from a population study. J Child Psychol
Psychiatr, 57: 1247–1257. doi:10.1111/jcpp.12573
• Risk factors for speech, language and communication needs
The Communication Trust Children (2014) and young people’s speech, language and communication needs - an introduction for
health audiences
https://www.thecommunicationtrust.org.uk/media/266719/the_communication_council_slcn_briefing_for_health_audiences-
_september_2014.pdf
Locke, A., Ginsborg, J. & Peers, I. (2002). Development and disadvantage: Implications for the early years and beyond.
International Journal of Language and Communication Disorders, 37(1): 3-15
Law, J., McBean, K. & Rush, R. (2011). Communication skills in a population of primary school-aged children raised in an area of
pronounced social disadvantage. International Journal of Language and Communication Disorders, 46(6): 657-64
26
References

27. Page 17
• Risk factors for speech, language and communication needs
Bryan, K. et al (2007). Language and communication difficulties in juvenile offenders. International Journal of Language and
Communication Difficulties, 42: 505-520
• Costs of speech, language and communication needs
RCSLT factsheet: The economic value of speech and language therapy
https://www.rcslt.org/speech_and_language_therapy/docs/factsheets/economic_value
• Impact of speech, language and communication needs
The Communication Trust Children (2014) and young people’s speech, language and communication needs - an introduction for
health audiences
https://www.thecommunicationtrust.org.uk/media/266719/the_communication_council_slcn_briefing_for_health_audiences-
_september_2014.pdf
• Management and support for CYP with speech, language and communication needs
Department for Education (2012) 'What Works': Interventions for children and young people with speech, language and
communication needs
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/556912/DFE-RR247-BCRP10.pdf
27
References

28. I am grateful to the following individuals for their comments on the report:
• Dr Jackie Cornish, National clinical director, children, young people and transition to adulthood,
NHSE
• Eustace de Sousa, National lead – children, young people and families, PHE
• Dan Devitt, Programme manager, children and young people programme, Healthy London
Partnership
• Denise McCoy, Principal knowledge transfer facilitator, PHE
• Jignasa Mehta, Orthoptic lecturer, Directorate of orthoptics and vision science, Liverpool
University
• Dr Despina O’Flynn, Teacher and carer
• Dr Dominic Slowie, National clinical advisor (learning disability and premature mortality), NHSE
• Allison Thorpe, Public health specialist
• Tycie West, Regional communications manager, PHE London
• Caroline Wright, Policy advisor, Royal College of Speech and Language Therapists
28
Acknowledgements

29. 29
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Prepared by: Dr Marilena Korkodilos, Deputy director, specialist public health services, PHE (London) and Nicky Brown, Child
public health specialist for the cerebral palsy section
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Published September 2017
PHE publications gateway number: 2017404