Special Educational Needs and. children with Down syndrome,

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1 Special Educational Needs and Disabilities provision in England for children with Down syndrome, Williams syndrome and Autism spectrum disorders Maria Ashworth Dr Jo Van Herwegen and Dr Olympia Palikara

2 In England and Wales 1. A stronger input from parents and children 2. The coproduction of Education Health and Care Plans (EHCP) to provide better support for those with SEN 3. Higher aspirations and improved outcomes 4. Greater focus on successful transitions Department for Education and Department of Health (2015)

3 How? There is little practical guidance about how to implement the changes outlined in the new SEND Code of Practice (Castro & Palikara, 2016) Policy changes with no practical guidance could have a significant impact on children and young people with Down syndrome, and their families. Vague descriptions and no guidelines about how to how to coproduce an EHCP Reports of too much paperwork for schools and local authorities to handle (Fatina, 2017)

4 Aims The current study evaluated the impact of the new SEND Code of Practice for children and young people with Down syndrome, in contrast to other neurodevelopmental disorders. Using a cross-syndrome comparison of parental and professional views from a large survey, the current study examined the syndrome specific and general impact of the new SEND Code of Practice

5 A cross-syndrome comparison Down syndrome (DS) Williams syndrome (WS) Frequency 1 in in 18, in 100 Cognitive Behavioural and sensory Cognitive impairments; IQ between 50 70, average 50 Cognitive impairments; IQ between 40 86, average 55 Repetitive behaviours and sensory issues Autism Spectrum Disorders (ASD) Wide cognitive ability variability Repetitive behaviours and sensory issues (Jones et al., 2000; Martens, Wilson & Reutens, 2008)

6 Parents % Girls DS (n= 80) 46% WS (n= 114) 53% ASD (n= 78) 22% M age (SD) months (67.09) (78.37) (49.16) N= 272 parents (99.2% mothers) of children aged 4 25 years old

7 School Demographics DS WS ASD School age Younger than 3 1.9% 5.1% 2.4% Nursery 8.6% 15.4% 3.5% Primary school 50.5% 47.0% 41.2% Secondary school 21.9% 17.9% 34.1% Post % 14.5% 18.8% Current schooling Mainstream 49.5% 37.8% 32.9% Special education 49.5% 62.2% 54.9% Home schooled 1.0% 0.0% 12.2%

8 Education Health and Care Plans (EHCPs) DS EHCP % WS EHCP % ASD EHCP % Have EHCP Do not have EHCP 11% 28% 29% 72% 71% 89% Children and young people with Down syndrome were more likely to have an EHCP 2 (2)= , p=.004

9 EHCP waiting time in weeks (months) DS 26 weeks (6.5) WS = DS (p=.292) WS < ASD (p=.001) WS 34 weeks (7.88) ASD 48 weeks (11.09) DS < ASD (p=.030) Welsh AnOVA: F(2,89.054)= 6.780, p=.002

10 % How satisfied are you with how your child's strengths and needs are being described on the EHCP document? Extremely dissatisfied Somewhat satisfied Neutral Somewhat satisfied Extremely satisfied DS WS ASD 2 (8)= , p=.011

11 % % I want to be more involved Involved the right amount I want to be less involved 80 Parent involvement in the EHCP 2 (4)= , p=.028 DS WS ASD Parent voice captured in the EHCP 2 (6)= , p = Not well at all Slightly well Very well Extremely well

12 Satisfaction Satisfaction with support Satisfaction with 1:1 support DS WS ASD Satisfaction with school support Parents of children with ASD were less satisfied with: 1:1 specialist support their child received 2 (2)= 9.572, p=.008 overall support of the school 2 (2) = , p=.004 Van Herwegen, Ashworth, & Palikara (article in press, 2018).

13 % How familiar are you with the new SEND Code of Practice? Not familiar at all Slightly familiar Moderately familiar Very familiar Extremely familiar DS WS ASD 2 (8)= , p <.001

14 Parents Conclusions 1. Relatively more children and young people with DS have an EHCP compared to our samples in WS and ASD 2. Children and young people with DS have the shortest waiting time for EHCPs 3. Parents of those with DS are more positive about the EHCP quality and also in their parental involvement in the process 4. 40% of DS parents know very little about the EHCP process and changes.

15 Professionals Teacher SENCo LA or TA Specialist Professionals DS (N=26) 23% 23% 18% 36% WS (N=38) 38% 14% 21% 27% ASD (N=77) 28% 40% 4% 28%

16 % % SEND Code of Practice No Yes I am aware of some changes DS WS ASD Training on SEND Code of Practice SEND Code of Practice familiarity No Yes

17 % How confident do you feel in relation to your knowledge about (syndrome)? Not confident Moderately confident Very Confident DS WS ASD 2 (4)= 34.49, p= <.001

18 % Do children with (syndrome) need specialist support? Disagree Neutral Agree DS WS ASD

19 % Do children with (syndrome) need? DS WS ASD DS WS ASD DS WS ASD DS WS ASD EHCP SLT OT Counselling Disagree Neutral Agree

20 Professionals Conclusions 1. Most professionals have training on the new SEND Code of Practice 2. Good confidence in knowledge of the disorder 3. 50% of professionals do not think that children with DS need specialist support and there is variability about what support is needed

21 SEND Code of Practice: a syndrome specific impact 1. A stronger input from parents and children Parents do feel involved 2. The coproduction of Education Health and Care Plans (EHCP) to provide better support for those with SEN parents know less of SEND code of practice and thereby possibly of EHCP processes Parents are not very satisfied with the specialist support their child receives Professionals report children with DS do not need specialist support

22 Limitations Select group of respondents Smaller group of professionals of children with DS (N= 26) Self-report data may not accurately reflect the practice or provision, especially when it comes to 1-to-1 provision and specialist support that the child is receiving in the school Did not examine how provision factors are influenced by the severity of the disorder or where children sit on the spectrum

23 Implications for individuals with Down syndrome Examples of good practice for EHCPs could be shared amongst wider SEND communities To address the disparity of knowledge about the new SEND Code of Practice and provision between parents and professionals, DS organisations could focus on more training and information about: the new SEND Code of Practice what support is beneficial for children and why For optimal provision of new SEND policies, accounted for by parents and professionals together for true coproduction.

24 Thank you to all of the participating families Thank you Kingston University CDLD Uni

25 References Castro, S., & Palikara, O. (2016, November). Mind the gap: the new special educational needs and disability legislation in England. In Frontiers in Education (Vol. 1, p. 4). Frontiers. Department for Education and Department of Health (2015) Special educational needs and disability code of practice: 0 to 25 years. Available at: Jones, W., Bellugi, U., Lai, Z., Chiles, M., Reilly, J., Lincoln, A., & Adolphs, R. (2000). II. Hypersociability in Williams syndrome. Journal of cognitive neuroscience, 12(Supplement 1), Martens, M. A., Wilson, S. J., & Reutens, D. C. (2008). Research Review: Williams syndrome: a critical review of the cognitive, behavioral, and neuroanatomical phenotype. Journal of Child Psychology and Psychiatry, 49(6), Van Herwegen, J., Ashworth, M., Palikara, O. (article in press, 2018). Parental views on special educational needs provision: crosssyndrome comparisons in Williams syndrome, Down syndrome and Autism Spectrum Disorders. Research in Developmental Disabilities