Families Choices: Choosing Schools for Disabled Children

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How can families be better supported to make these choices? ..... draining and often his siblings miss out on the best of me (though I try to find balance) because ...

Families Choices: Choosing Schools for Disabled Children

Prepared for

Carol MacDonald Lesley Gray

September 2011

Contents Acknowledgements .................................................................................................................................3 Executive Summary .................................................................................................................................4 Background..........................................................................................................................................4 Methodology .......................................................................................................................................4 Findings ...............................................................................................................................................4 Background..............................................................................................................................................5 Aims/objectives.......................................................................................................................................5 Survey Methodology ...............................................................................................................................5 Sample Demographics.............................................................................................................................7 Schooling Data.....................................................................................................................................7 ORRS application data .........................................................................................................................9 Disability/special needs.....................................................................................................................10 Findings .................................................................................................................................................11 Impact of Disability on schooling ......................................................................................................11 Supports/services needed.................................................................................................................12 School choice.....................................................................................................................................13 Impact of the search for a suitable school ........................................................................................15 Supporting family choice...................................................................................................................24 Conclusion .............................................................................................................................................29 References.............................................................................................................................................30

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Acknowledgements This project was made possible with a grant from the Lottery Grants Board Community Sector Research Fund. We would like to thank those who generously gave of their time, experience and expertise to this report. The research would not have been possible without the contribution of the parents/caregivers who completed questionnaires honestly and freely. A special thank you to the “Wairarapa Autism 4 Life" group, whose members gave their time and advice to pilot the draft questionnaire.

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Executive Summary Background This research advances the work of a preliminary study commissioned by CCS Disability Action in 2009 (Morton & McMenamin, 2009) which suggested that for some parents of disabled children schooling “choice” may be an illusion. The aim of the current research was to describe the kinds of choices families who had made an application to the Ongoing and Reviewable Resourcing Scheme (ORRS) face when their disabled child(ren) start or change schools. CCS Disability Action had two key outcomes in mind for the project: 1.

To better inform Government, Ministry of Education and educational providers about the importance of schooling choices for children with disabilities, and

2.

To produce quality, user-focused resources to better inform and support families in the search for suitable schooling options.

The results presented in this report provide clear direction and a rich source of material from which to advance those goals.

Methodology The sample consists of 204 families who had made one or more ORRS applications. The study was publicised through CCS Disability Action branches, schools and other community agencies. The survey was as an online “Survey Monkey” questionnaire with a postal alternative. Between May and June 2011 questionnaires were returned for 217 children.

Findings •

The main impacts on a child’s schooling because of her/his disability were that the child needed support, started school later and were unable to realise their potential. • Most respondents indicated that their child needed the support of a teacher aide. • The main reason for choosing the current school included: the facilities at the school to support learning, the reputation of the school, the approach/attitude of the school to inclusion, the attitude of principal and teachers and a safe environment • For half the respondents, the main reason for the move from the previous school was that it was a natural progression. One-quarter felt that the teachers at the previous school lacked the knowledge about the special needs of their child. •.............................................................................................. The majority of respondents indicated that the school their child currently attends was their first choice for their child. Half felt that they had not always had a real choice. •.............................................................................................. Stress was the predominant issue reported in terms of the impact of the search for a suitable school. Nine interrelated themes were identified: “Going into battle”, Impact on the 4

child, Impact on the family; Relocating, Financial issues, Time, Travel, School attitudes, Support and advice. •.............................................................................................. To improve or better support the choice of schools, parents wanted: better information and advice, more supportive and welcoming schools and for legal/funding issues to dealt with.

Background CCS Disability Action believes that the families of disabled children have as much right as any other New Zealand families to make authentic choices about where to educate their children. In theory, a wide range of educational choices are available to parents of disabled children. CCS Disability Action, with the support of the JR McKenzie Trust, undertook a preliminary study which included a literature review, interviews, and initial scoping work (Morton & McMenamin, 2009). The initial research suggested that for some parents of disabled children “choice” may be an illusion. Two of the five families interviewed reported that they had to uproot their entire family and life to another place in New Zealand to get the education they wanted for their children. Findings from the literature review and analysis of the interviews were used in the initial scoping of the national questionnaire utilized in the current research.

Aims/objectives The aim of this research was to describe the kinds of choices families who had made an application to the Ongoing and Reviewable Resourcing Scheme (ORRS) face when their disabled child(ren) start or change schools. The objectives were to explore the following questions: •

How and why do families of disabled children and young people make the educational choices they do, particularly if these students have ongoing high or very high needs and are ORRS funded?



Does the theory of choice match the reality for families?



How do these choices impact on the disabled children, their families and the community?



How can families be better supported to make these choices?

Survey Methodology The sample consisted of 204 families from across New Zealand who had made one or more ORRS applications. ORRS provides resources for a group of students who have the highest 5

need for support with their education. Students applying for these schemes are at the High or Very High level. ORRS Funding is administered by the Ministry of Education: Special Education. It is used to purchase resources such as specialist or therapist expertise, additional teaching or paraprofessional support. In 2011, after the commencement of this research, the Ongoing and Reviewable Resourcing Schemes (ORRS) were changed to the Ongoing Resourcing Scheme (ORS). The Reviewable scheme ceased to exist and children who were in the reviewable scheme at the start of the 2011 school year were transferred to ORS (Ministry of Health, 2011). The current study was publicised through the seventeen CCS Disability Action branches, schools and other community agencies. Questionnaires were completed during May - June 2011. The survey was as an online “Survey Monkey” questionnaire with a postal alternative for those families interested in participating but who did not have access to a computer and/or did not wish to respond electronically. These families were invited to contact their local branch of CCS Disability Action who provided them with a printed questionnaire and preaddressed and stamped return envelope. The questionnaire comprised 36 questions with mainly tick box response options. In addition to general demographic data, the questions were designed to gather information on four aspects of the process of choosing schools for disabled children: 1. Factors affecting the educational choices families make 2. Perceptions of choice in school selection 3. The impact of those choices on the disabled children and their families 4. How families think they could be better supported to make educational choices. In total, 217 questionnaires were returned from 204 families. Half (109: 50%) of the responses were received by mail or email and 8 pilot questionnaires were included in the data set as the final version of the questionnaire was not changed significantly. The remaining 100 (46%) were completed online. Respondents were asked to complete separate questionnaires for each of their children for whom an ORRS application had been made. Demographic data relating to the respondent (person completing the questionnaire) was completed and included only once for those completing more than one questionnaire. Twelve respondents completed multiple questionnaires. Most (11) completed 2 questionnaires but 1 respondent completed questionnaires for 3 children.

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Sample Demographics The sample demographics are summarised in Table 1. The age of students (individuals for whom questionnaires were completed) ranged from 4 to 40. The mean was 12.35. Half (107: 49%) of students were aged 12 or less, approximately primary and intermediate age. One child was four years of age and questionnaires were completed for 24 (11%) individuals who were over the age of 18. These questionnaires were completed retrospectively as the individuals were no longer attending school. Almost two-thirds of the students (137: 63%) were male, one-third (69: 32%) were female and were identified as being New Zealand European (143: 66%). For both students and respondents a number specified New Zealand European/Maori under the “other” option. These are presented as separate categories. Table 1: Sample demographics Student data (N= 217) N Gender Male Female Not specified Ethnicity NZ European Maori NZ European/Maori Other Not specified Age

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