Inclusive Education: Panacea or Ill-Wind for the Child with a Visual Impairment?

1. Inclusive Education: Panacea or Ill-Wind for the Child with a Visual Impairment? Dr Colette Gray EECERA Prague: 2007

2. Background • Inclusive education is at the centre of UK government policies in special needs education and pivotal to government attempts to address educational underachievement. • It also forms part of a central global agenda with Articles 12, 13 & 23 of the UN Convention on the Rights of the Child, ratified by the UK in 1991, specifically addressing the participation rights and provision of children with disabilities in mainstream education EECERA Prague: 2007

3. In practice this caused a shift from provision in special schools to provision in mainstream schools, along with a shift from support systems characterised by children's withdrawal from the classroom to those based on in-class support. • Despite a considerable body of research focusing on inclusive educational policies, there is little systematic research on its many facets. • This paper aims to address one aspect of the debate that receives scant attention, specifically the inclusion of children with visual impairment (VI) in preschool settings. The paper draws on the qualitative findings of an investigation into the experience of parents of children with a VI. EECERA Prague: 2007

4. 6/60 6 months 12 months 18 months 6/6 24 months Visual acuity EECERA Prague: 2007

5. Prevalence • In Sweden • 13.1 per 10,000 births in Sweden • In Denmark • Prevalence rate in Denmark 12.9 per 10,000 births • In USA • An estimated 10.7 per 10,000 births • IN UK • Approx. 10.5 per 10,000 births EECERA Prague: 2007

6. What is Significant Visual Impairment? • 6 of every 10,000 children born in the UK each year become severely visually impaired or blind by their 16th birthday and probably a further 12 becoming visually impaired (worse than 6/18 or 0.5 to 1.0 Log MAR). • Thus there are at least 4 newly visually impaired children each day in the UK and 2 per 1000 children in a given population at any time are visually impaired or blind . EECERA Prague: 2007

7. Educational Outcomes Children with blindness and VI learn differently, for no other reason than the fact that in most cases they cannot rely on their vision to provide information (Gray, 2005) • The American Foundation for the Blind (2003) point out that more than 70% of young people with a VI are unemployed and on assistance • Boyce et al., (1999) found that compared to sighted children those with a VI scored significantly below their peers on tests EECERA Prague: 2007

8. Participants • In total 6 parents agreed to participate in this qualitative study. Although technically a self-selecting group, names were supplied from a listing held by RNIB. Mean age of children = 4 range 3 – 6. • Vignettes are included to highlight the differing experiences of children with a VI EECERA Prague: 2007

9. Methods • Initial contact with each parent was made by the RNIB who, having ascertained their willingness to participate in the project, passed details to the research team. • After an initial introductory telephone call, a letter was forwarded to each participant outlining the aims of the study. Each interview session lasted approx. 90 minutes and was tape recorded for themetic analysis. EECERA Prague: 2007

10. Organisation of Results • Findings make poignant reading and suggest that a number of early years professionals adopt an exclusionary policy in an inclusive environment. • The results are presented in two parts. First, an over view of the findings is provided. • Second, 2 vignettes are presented to highlight the very different experiences of the children in the study. EECERA Prague: 2007

11. Results • The majority of parents sought advice from their local ELB or teacher of the visually impaired peripatetic on the type of education most suitable for their child • Most were cautioned against placing their child in mainstream education. Although the reasons for this varied from family to family, much of the advise given was offered ‘off the record’ EECERA Prague: 2007

12. Mainstream V Dedicated Schools For example, one mother recalled how: • We were told it was not within our child’s best interest to mainstream her.The adviser said, in her opinion and off the record, mainstream wouldn’t cope well. When we insisted on talking to local schools, I know she was annoyed. But I pointed out Tony Blair’s talk about parental choice. Our local primary were really keen to meet us to talk about how they could help. I know she only went for a short time but it was her right. EECERA Prague: 2007

13. Another family were angry at the pressure they faced to have their daughter statemented: • Although her daughter was progressing well at nursery, they are both bright live wires, the adviser said she had to be statemented. This was to provide extra resources and support to the school. We refused on the grounds that she was not mentally impaired and labelling her could prove detrimental. We want her to take her 11+ and to do what other kids do and a statement would stop that. She did suggest a dedicated school for the blind and, maybe its me but, I thought she pushed that. EECERA Prague: 2007

14. Most of the parents tended to view dedicated schools as the poor relative in education. One mother remembers how she: • I did everything to keep her out of a special school. When they said they couldn’t cope in mainstream I just cried. Apart from hearing she had RP, it was one of the worst days of my life. In contrast a father was torn: • Normal kids go to ordinary schools. I kept saying it would be the makings of him, but it really hammered home the point that he was different, soiled goods, not good enough. I was devastated, it was a real low point for us. EECERA Prague: 2007

15. Emma • Is an only child, she is 6 years – cortical visual impairment & a slight learning disability. Lives with mum, in a suburb of Belfast. Mum has a good job and appears to manage well • Emma is lively and laughs frequently • She likes sweets and singing • She enjoys having people ‘fix her hair’ • And wants to be a hairdresser when she grows up • She has no friends at home but lots at school • Mum appears to cope well and they have a very set routine, however this is based on necessity rather than choice. EECERA Prague: 2007

16. From birth, Emma’s life has been fraught with difficulty. She was a low birth weight premature baby born at 27 wks gestation • ‘First they said she had cerebral palsy, then it was a learning disability and finally they realised that she couldn’t see. Then when I was told they couldn’t do anything, they said she was too old, I cried for days.It’s been awful, they should know to look for these things before its too late’. EECERA Prague: 2007

17. ‘I used to carry her from room to room. No matter what she wanted I got for her. I think I was scared she would hurt herself. An early years specialist called and taught her to play. • I didn’t realise she was so passive; she never reached out or rolled over like other children. Now she’s more confident and knows her way around’. EECERA Prague: 2007

18. Educational opportunities • According to Emma’s mum: • ‘Children take their lead from the teacher. It is their role to ensure that everyone is included in classroom activities and that every child has a turn. Ensuring the ethos is respectful and kind goes a long way to fostering this.’ • She also believes that:‘where appropriate, inclusion can have a number of benefits for children such as offering the same educational experience that sighted children get and ensuring, through exposure, sighted children learn to understand the needs of the VI’. EECERA Prague: 2007

19. She also believes that ‘inclusion it is not a panacea’ and that ‘some children might benefit from specialist schooling’. Having started Emma at nursery, she recalled how: ‘within weeks she’d gone from a happy wee thing to one who rocked and cried. The teachers said she was doing fine, but I had a child who cried and clung all the time, it was awful. I called at the nursery and there she was eating lunch all by herself. The others [children] were eating together and laughing and having a great time. She could hear them but couldn’t join in. I asked the teacher why she was on her own and she said they thought it was safer in case the others accidentally hurt her; so much for inclusion. I was so upset, I told her teacher she wouldn’t be back. EECERA Prague: 2007

20. Primary school Primary education also proved elusive: • ‘The peripatetic teacher took us to a special school near here and I thought it was lovely, but they couldn’t take her because of her visual problems. The ELB refused to train up one of the teachers, saying it was too expensive. • The school for the blind couldn’t deal with her other problems. The ELB wanted her mainstreamed but refused to pay for a LSA. Then I heard about this place and when I saw it I knew she would do well there. The local authority pays for it because there’s nothing like it in NI, but they aren’t happy.’ EECERA Prague: 2007

21. Emma • Attends a specialist unit in Edinburgh • Travels by air on Sunday night returning on Friday evening • Mum flies out to collect her • The cost of flights, a taxis to & from the airport each week & boarding are met by the local ELB • With the exception of one week at summer school funded by RNIB, Emma has no social activities & no friends outside of school • Her mother is concerned for her future EECERA Prague: 2007

22. Karen & Kate Karen & Katie are 5 year old twins – they were diagnosed with cataracts immediately after birth and fitted with their first set of lenses at 6 wks of age. They recently moved to a larger house in an inner city area so that dad can work from home • Both parents are blind, as trained physiotherapists they work their hours around the family and manage well • The girls have a 2 yr old brother Ben who is the only fully sighted person in their family. However, there is concern over Ben’s sight • They are very lively and enjoy riding their bikes, roller skating, talking books and playing with their friends. They want to be princesses when they grow up EECERA Prague: 2007

23. Educational Opportunities • As the girls’ sight continues to deteriorate, their parents are preparing them for a time when they may be totally blind. • ‘ as with Ben, we have taught them how to use computers, to search for information on the net and to use keyboards well. We believe if they all lose their sight these skills will prove invaluable later on. Ben knows his colours and we try and explain them in terms of feelings with yellow being sunny and warm, red hot and fiery. We want him to always have that memory and for the girls to also have that sense of colour ’ EECERA Prague: 2007

24. Educational opportunities • According to the twins parents: ‘we can spot untrained staff a mile away, they tend to be over protective For example, in the nursery we found staff reluctant to let the children play outside. They kept them in at break and lunch, and held their hands outside. The girls were really frustrated and used to complain all the time, but the staff insisted on holding on to them’. EECERA Prague: 2007

25. In contrast at home the girls learnt to ride bikes by: ‘falling off. They have to learn to operate in the wider world to know their space and their limits and they can’t do that by being held back. We encourage them to take risks. If they fall they get back up and try again.’ They felt they had: ‘fought long hard battles with the staff at Nursery. I think they thought we were mentally incompetent or worse might sue them!’ They feel this prepared them for primary school battles EECERA Prague: 2007

26. Primary school • The twins attend the local primary school, where they appear happy • The twins are popular play with local children at home and have friends at school, their parents have few concerns for their future • The parents face continual pressure to statement the girls EECERA Prague: 2007

27. Conclusions • The individual needs of each child must be evaluated before educational options are considered • Some parents perceive special education to be a ‘last resort’ and prefer mainstream education • Untrained staff can be a barrier to the full integration of children with a visual impairment in mainstream schools • To be cost effective, consideration should be given to training teachers in the skills required to education children locally EECERA Prague: 2007

28. Conclusions • Children with a VI often feel isolated and alone, few have friends at home • Parents are frequently confused by the advise given and often feel ‘overwhelmed’ • The statementing process has implications for children • For further information or copies of papers please contact c.gray@stran.ac.uk EECERA Prague: 2007