Aboriginal Students with Disabilities - September 2003
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Aboriginal Students
with Disabilities
September 2003
Ministerial Advisory Committee:
Students with Disabilities
This report is available on the Ministerial Advisory Committee: Students with Disabilities’ Website at www.macswd.sa.gov.au Produced by the Ministerial Advisory Committee: Students with Disabilities Adelaide South Australia September 2003 Written by Rosanne DeBats Edited by Margaret McColl and Jo Shearer Design and layout by Luisa Pirone and Lyn Kohl
Painting by Tonyia Campbell, Warriappendi School
Foreword In an effort to understand the current issues of importance to the families of Aboriginal children and students with disabilities, the Ministerial Advisory Committee: Students with Disabilities agreed to undertake a project examining this area. It was decided very early in the project to listen to the stories of Aboriginal families with a child with a disability, and to hear what is important to them. Fourteen families told their stories, and these form an important part of the report. We would like to acknowledge the time given by these families in telling their stories, and thank them for their openness in sharing their experiences with the Task Group. The report has also benefited from the views of a range of professionals, both Aboriginal and non-Aboriginal, in both the education and health sectors. We wish to thank them for their involvement in the project. Their commitment to positive outcomes for Aboriginal children with a disability was clear and appreciated. Issues arising from the experiences of both families and professionals complement each other, and the discussion and recommendations have come from the confluence of these two streams of information. The report and recommendations relate to definitions of disability, recognition of culture, and cooperation between the health and education sectors. We believe that it provides a useful addition to the government’s significant focus on social inclusion, and in particular school retention. The Task Group included representatives from the government and non- government education sectors, and the health and disability sectors, including Aboriginal and non Aboriginal participants. We would like to thank the members of the Task Group for guiding the direction of the project as it unfolded. Finally, we would like to acknowledge the staff of the Ministerial Advisory Committee’s Secretariat. Margaret McColl (Executive Officer), and Rosanne DeBats (Project Officer) listened to and documented the family stories, managed the organisation of the Professional’s Forum, and provided the synthesis underpinning the final report. Jillian Miller and Ruth Summers Joint Chairpersons Aboriginal Students with Disabilities Task Group Ministerial Advisory Committee: Students with Disabilities
Contents Foreword Executive Summary 1 1 Background 7 2 Project Design 9 2.1 Stories of Aboriginal Families 9 2.2 Professionals’ Perspectives 9 3 Stories of Aboriginal Families 13 Story 1 17 Story 2 18 Story 3 19 Story 4 20 Story 5 21 Story 6 22 Story 7 23 Story 8 24 Story 9 25 Story 10 26 Story 11 26 Story 12 27 Story 13 28 Story 14 29 4 Discussion 33 4.1 Aboriginality 33 4.2 Disability 35 4.2.1 Diagnosis 36 4.2.2 Collaboration between Health and Education 38 4.2.3 Behaviour 38 4.2.4 Specific Disabilities 39 4.3 Schooling 42 4.4 Support Services 45 4.5 Remote Communities 46 References 49 Appendix 1—Terms of Reference 53 Appendix 2—Task Group Membership 55 Appendix 3—Aboriginal Lands 57 Appendix 4—Statistical Information 59 Appendix 5—Professionals’ Forum 63 List of Participants 63 Program 65 Refining the Issues 66 Plenary by Ms Jillian Miller 69 Appendix 6—Telephone Interviews, List of Participants 71 Appendix 7—Aboriginal Support Services 73
Painting by Henrietta Driver, Warriappendi School
Executive Summary Executive Summary The Ministerial Advisory Committee: Students with Disabilities has been established to provide policy advice to the South Australian Minister for Education and Children’s Services. In 2002, the Committee undertook a project to identify major issues related to the education of Aboriginal students with disabilities. While there has been an increasing emphasis by governments on Aboriginal education in recent years, there does not appear to be any South Australian study available that has focused on these students. The Terms of Reference for the Ministerial Advisory Committee’s project are included in Appendix 1. The Committee agreed that it was of primary importance that Aboriginal people were involved throughout the investigation. A Task Group was formed to oversee the Committee’s project and the members are listed in Appendix 2. The Group was fortunate to have the support of Ms Jillian Miller, the Superintendent of Aboriginal Education in the Department of Education and Children’s Services (DECS). Ms Miller chaired all Task Group meetings and her knowledge of the Aboriginal education community, both families and professionals, proved invaluable. The insight of all Aboriginal members of the Task Group undoubtedly contributed to the successful implementation of the project, while other members added expertise related to their particular education or disability sector. During the period of European settlement, Aboriginal culture has been at best ignored and at worst destroyed. It is only in recent years that efforts toward reconciliation have given a public face to the differences that exist between Aboriginal and non-Aboriginal ways of doing things. This project sought to include the views of Aboriginal people, as well as those of professionals involved in service delivery. To that end, fourteen families were asked to tell their stories and these have provided valuable understandings of the Aboriginal experience. A synopsis of each has been included in the report. Family and community are central to the lives of most Aboriginal people. It is important for Aboriginal children with a disability to maintain their cultural connections and not become isolated as a consequence of disability-focused interventions, particularly during their years at preschool and school. Aboriginal communities tend to accept difference and do not think in terms of labelling a child according to a medical model of disability. As a result, Aboriginal families do not necessarily respond to a set diagnostic label and do not see their children in terms of what they are unable to do. The bio-psycho-social model of disability, which considers disability to be a dynamic state of restricted function within a given environment, is closer to the Aboriginal way. In addition, families may not react positively to professionals that provide support by issuing a list of instructions on how to implement a specified intervention program. Aboriginal cultural life is based on relationships established over time. Support services that recognise and accommodate Aboriginal values are more likely to be successful, resulting in improved outcomes for Aboriginal children with a disability and their families. Diagnosis Standard assessment instruments for intellectual and communication disabilities are not culturally appropriate for many Aboriginal children. Problems with accurate assessment and, therefore, diagnosis have resulted in reluctance by some professionals to label Aboriginal children as having a disability. This has meant that many Aboriginal children have not been eligible for the extra support available to those given a label of disability. It is important that professional attention be given to developing an accepted, culturally appropriate procedure for verifying Aboriginal children with intellectual and communication disabilities, particularly when such verification will result in additional support. Professionals working in education will need to be trained in these procedures. Aboriginal Students with Disabilities Report 1
Otitis Media
Even without an effective approach to diagnosis, twice as many Aboriginal students have been
verified to have a disability as non-Aboriginal students (13.9 percent compared to 6.6 percent).
The prevalence of otitis media with subsequent conductive hearing loss among Aboriginal
children is a likely major contributor to the high proportion of Aboriginal children with a
Communication and Language disability (11.1 percent compared to 4.7 percent). The
occurrence of otitis media among Aboriginal children is estimated to be ten times that of non-
Aboriginal students. The effect of recurrent bouts of otitis media on hearing, and consequent
interruptions to learning, is a major factor in difficulties experienced by Aboriginal students at
school. A multi-pronged response to the effects of otitis media and conductive hearing loss
among Aboriginal students is essential, if students both with and without a label of disability are
to make the most of their educational experiences. This includes:
• Cooperation between health and education sectors in early identification of hearing
problems, by: screening all Aboriginal children for recurrent otitis media on entry to
preschool/school; cooperating in the treatment of recurring incidents; and arranging for the
sharing of information between health clinics and schools.
• Recognition of recurrent otitis media with conductive hearing loss (OM/CHL) as a diagnostic
category for which disability support is provided by the three education sectors. The
process for verification needs to be considered, to make it accessible for parents1, while
ensuring that children with intermittent problems are identified and supported.
• An increase in teacher awareness to recognise possible hearing problems in Aboriginal
children that may be related to OM/CHL. This would involve liaising with the health sector to
treat the medical problem, as well as modifying teaching approaches (eg before speaking
teachers should face the children and ensure they have their attention). In relation to the
curriculum, modifications could also include direct teaching of listening skills and providing
visual cues to support language.
• Changing the classroom environment to improve the acoustics, for example, minimise
background noise, increase carpeted areas, place pads on the bottom of chair legs, install
a sound field amplification system, and ensure adequate levels of light to assist lip reading.
Family and School Support
Many Aboriginal families have an uneasy relationship with formal schooling, which may be
related to their own schooling experiences and the different cultural expectations of schools
and Aboriginal communities. It is important that a partnership is developed between families
and schools, if positive outcomes are to be achieved for Aboriginal children with a disability.
Such partnerships require time to develop trust. Aboriginal Education Workers (AEWs) provide an
important liaison role between schools and families. It is critical that all Aboriginal students,
including those with a disability and those in special schools, have access to an Aboriginal
Education Worker, and that the staffing levels for AEWs take account of the lower student to
staff ratios that currently apply to disability support staff.
Aboriginal families prefer explanations and assistance on the support needs of their children on
a continuing basis, rather than a once-off intensive assessment and intervention plan. At
present there are few Aboriginal teacher assistants2 who are able to provide culturally aware
continuity of care for Aboriginal students with a disability. Regular conversations with Aboriginal
families are important to reinforce intervention plans. The provision of more Aboriginal teacher
assistants (possibly shared between sites) would assist families to be involved in their child’s
schooling, including the development of and participation in Negotiated Education Plans3. It is
important that the workload of Aboriginal teacher assistants be adjusted to take into account
the necessary time involved in building relationships with Aboriginal families in order to meet their
needs.
1 In this report, reference to ‘parents’ includes carers and legal guardians.
2 In this study, the title ‘teacher assistant’ includes School Services Officers in government schools and Education Support
Officers in non-government schools.
3 A Negotiated Education Plan (NEP) is used in DECS schools. The non-government schools use equivalent curriculum
plans.
2 Aboriginal Students with Disabilities ReportCulture and Community Connections Connections between school and the local Aboriginal community and culture are important for Aboriginal children with a disability. Commonwealth Aboriginal Student Support and Parent Awareness (ASSPA) funding provides an opportunity for appropriate activities. Information should be sought on successful models for the use of ASSPA funding to assist Aboriginal students with a disability and their families to develop school and community connections. Sector based disability support staff should be provided with this information and encouraged to consider ways in which this funding might be used in schools where Aboriginal students with disabilities are enrolled. For Aboriginal students with a disability, there are few people who combine an understanding of their culture and disability. It is important that more Aboriginal people are encouraged to become teachers and specialise in Special Education. The provision of targeted Aboriginal traineeships that streamline the recruitment process as well as scholarships for Aboriginal teachers willing to specialise in Special Education, would help to fill this need. Flexibility in Support Aboriginal families deal with a number of agencies and attend numerous appointments and meetings when they have a child with a disability. They encounter problems of access related to information and/or transport. Understanding what is involved in obtaining assistance or managing to keep an appointment may provide challenges not understood by non-Aboriginal support agencies. It is necessary to build flexibility into service provision that recognises cultural differences. At the school level, it is important that consideration is given to assisting families with tasks such as filling in forms, keeping appointments or providing transport when required. These support requirements should be documented in the student’s Negotiated Education Plan. A ‘One-Stop Shop’ involving collaboration between the health and education sectors, in both providing services and sharing information, would lessen some of the current problems with access. School sites could be used for screening and intervention services, as well as providing nutrition programs and other health related activities. The models currently being developed between the Nganampa Health Service and Anangu Education Services in Alice Springs, and the Healthy Ways Project involving the Department of Human Services and DECS, need to be extended and funding provided for this model to be applied in other regions of the State. Country Centres In addition to the issues discussed above, country centres have the compounding problem of lack of access to specialist diagnostic services, which makes it more difficult for children to be verified with a disability, thereby receiving appropriate support. Attention needs to be given to more effective ways to provide specialist services to Aboriginal families in country and remote areas. Schooling on the Lands Schools on the Lands (see Appendix 3) present particular challenges, and it is important that they employ experienced teachers rather than new graduates. For most children on the Lands, English is a second (or third) language perhaps first encountered at school. It is important that all teachers have some proficiency with the local language. The high incidence of otitis media on the Lands (with up to 85 percent of children affected) suggests that these schools must adopt best practice in relation to treatment, as well as classroom responses to the associated hearing loss. Schools on the Lands need to incorporate Aboriginal ways of doing things. Given the problems of infrastructure in remote communities, schools would be highly valued by the Aboriginal community if they were run as community centres: providing a local service coordination point; remaining open during vacation periods; and providing nutrition programs, adult education, and other health and education activities chosen by the local community. Aboriginal Students with Disabilities Report 3
Recommendations
It is recommended that the Minister for Education and Children’s Services approve the
forwarding of this report to the Chief Executives of the three education sectors, for consideration
and implementation of the following recommendations.
Recommendation 1
Culturally appropriate assessment procedures should be developed to verify Aboriginal children
with intellectual, communication, and hearing disabilities, particularly when such verification will
result in additional support. Professionals working in the education sectors should be trained to
use these procedures.
Recommendation 2
Urgent attention should be given to the high levels of recurrent otitis media with conductive
hearing loss (OM/CHL) in Aboriginal children and the effect this has on their learning outcomes.
The following actions are recommended:
• Cooperative arrangements should be developed between the health and education
sectors in relation to early diagnosis and treatment, sharing of information, and ongoing
monitoring and intervention, as necessary.
• The diagnostic category OM/CHL should be developed and utilised by disability support
services within the three education sectors.
• Teachers must be provided with information and training to assist them in recognising
OM/CHL in Aboriginal students. Teachers need support to liaise with health staff in
facilitating an appropriate medical response, and to modify their teaching practices.
• Classrooms should be modified to achieve maximum levels of light and acoustic efficiency.
Sound field amplification systems should be installed in junior primary classrooms, in
particular those with Aboriginal students.
Recommendation 3
The number of Aboriginal Education Workers should be increased and, where appropriate,
shared between sites so that all Aboriginal students with a disability have access to this support.
The staffing levels for AEWs should take account of the lower student to staff ratios that currently
apply to disability support staff.
Recommendation 4
An increased number of Aboriginal teacher assistants should be appointed to assist Aboriginal
families to be involved in their child’s schooling, including the development of and participation
in Negotiated Education Plans. It is important that the workload of Aboriginal teacher assistants
be adjusted to take into account the necessary time involved in providing this support including
building relationships with Aboriginal families.
Recommendation 5
Schools that enrol Aboriginal students with a disability should be provided with information on
the Aboriginal Student Support and Parent Awareness (ASSPA) funding to assist Aboriginal
families to develop school and community connections. Sector based disability support staff
should also be provided with this information and encouraged to consider ways in which it might
be used in schools. Information may include examples of successful practice.
4 Aboriginal Students with Disabilities ReportRecommendation 6
Targeted traineeships that improve the recruitment process for Aboriginal teachers, as well as
scholarships for Aboriginal teachers willing to specialise in Special Education should be offered.
Recommendation 7
Flexible service provision is critical for Aboriginal families. When Aboriginal students with
disabilities are enrolled, schools should consider assisting with the completion of forms and
attendance at appointments, including the provision of transport when required. This type of
additional support must be included in the student’s Negotiated Education Plan.
Recommendation 8
Current models of a ‘One-Stop Shop’, involving collaboration between the health and
education sectors in sharing information and providing services at one community based
location, should be extended. Schools provide an excellent venue for this type of initiative,
particularly in rural and remote areas of the State.
Recommendation 9
More effective ways of providing specialist diagnostic services to families in rural and remote
areas of South Australia should be developed.
Recommendation 10
To assist in addressing specific issues relating to Aboriginal Schools on the Lands, action should
be taken to:
• employ experienced teachers at all sites
• develop basic skills in the local language for all current teachers
• train relevant sector based education professionals in the identification of and response to
otitis media and conductive hearing loss
• develop school sites into local community centres that are open during vacation periods,
and have the capacity to provide a range of health and education services and activities.
Aboriginal Students with Disabilities Report 51 Background 1 Background A disability is defined in Section 3 of the South Australian Disability Services Act 1993 as one that is attributable to intellectual, psychiatric, cognitive, neurological, sensory or physical impairment or a combination of any of those impairments; is likely to be permanent; and results in the person having a reduced capacity for social interaction, communication, learning, mobility, decision making or self care, and a need for continuing support services. There are difficulties in establishing the rate of disability among Indigenous people, since there are varying social constructs of what constitutes a ‘disability’. The statistical data on disabilities within Aboriginal communities are vague and incomplete due to cultural differences in defining disabilities and special needs. The National Indigenous Disability Network Working Party (2000) reported that accurate information on the nature and prevalence of disability in Indigenous communities, particularly as it varies across urban, rural and remote areas, is scarce. Under- reporting has been associated with questions in the identification of Indigenous peoples and the differing definitions, and therefore self-reporting of disability between Indigenous and non- Indigenous groups (Australian Institute of Health and Welfare, 1998). Both health and Aboriginal agencies are turning their attention to disability within Aboriginal communities. Since 1999, the National Indigenous Disability Network Working Party has held annual conferences. In August 2002, the first South Australian Aboriginal Disability Conference was held with the theme of ‘Gathering People, Linking Voices’. A State Aboriginal Disability Network Working Party was established in October 2002 and will link with the National network. To date, much of the focus for these groups has been on disabilities experienced by adults, in particular the older Aboriginal population. In 2002, there were 7,096 Aboriginal students in South Australian schools. This number comprised 2.8 percent of the total student population, with 91.5 percent in Department of Education and Children’s Services (DECS) schools. The rate of disability among Aboriginal students in DECS schools was more than twice that of non-Aboriginal students (13.9 percent of Aboriginal students with a verified disability, compared with 6.6 percent of non-Indigenous students). These rates are lower in both the Catholic and Independent school sectors. (See Appendix 4, Tables 2 and 3). However, most educators believe that the actual incidence of disability among the Aboriginal student population is higher than the verified and reported statistics show. Aboriginal students with a disability can experience problems in schools related to both their disability and their Aboriginality. In recent years, Aboriginal education has received increasing attention and a number of studies have been published that discuss issues such as student non- attendance (Gray and Beresford, 2002); lower achievement of basic skills and early school leaving (MCEETYA Taskforce on Indigenous Education, 2001). The National Indigenous English Literacy and Numeracy Strategy (NIELNS) has identified six key elements for education sectors to enhance the success of Indigenous students. This includes overcoming hearing, health and nutrition problems. The incidence of hearing problems among Aboriginal children is a major issue, discussed further in Section 4.2.4. This report includes issues in the education of Aboriginal students that relate to both their disability and their Aboriginality. Aboriginal Students with Disabilities Report 7
2 Project Design
2 Project Design
The Task Group, established to oversee the Ministerial Advisory Committee’s project on
Aboriginal students with disabilities, decided to adopt a dual approach to the collection of
information:
1. listening to the stories of Aboriginal families with a child with a disability
2. consulting with a range of professionals working in the area of Aboriginal education.
In addition, statistics were collated on the incidence of verified disability among Aboriginal and
non-Aboriginal students in the three education sectors.
2.1 Stories of Aboriginal Families
In 1996, in South Australia, 41 percent of Aboriginal people lived in the Adelaide metropolitan
area. This represents a higher percentage than the 27 percent average for all Australian capital
cities. Sixteen percent of Aboriginal people lived in rural or remote communities with less than
200 people, and the remaining 44 percent were living in country towns or centres. (See
Appendix 4, Table 1 for details.)
Aboriginal families living in the metropolitan area of Adelaide face different issues from those
living in country centres. Living in a remote Aboriginal community is significantly different from
both of these. The Task Group’s aim was to hear the stories of families living in each of these
geographical areas.
Members of the Task Group provided the contacts with many of the families. Schools and
centres with relatively high Aboriginal enrolments were also asked to provide contacts. The
stories summarised in the report are small in number (n=14). However, they cover a variety of
family situations in the three targeted geographical areas of South Australia and include a
range of school settings (special school, special class, regular classroom, and partial home
schooling), as well as different types of disability.
Two members of the Task Group, including one person with an Aboriginal background,
interviewed all families. Some families met in a group of two or three. The discussions were
recorded on tape, transcribed and then summarised. With the approval and permission of
families, these summaries have been included in the report. Neither individuals nor schools or
centres have been named. The content of the stories has contributed to the discussion in
Section 4 of the Report.
2.2 Professionals’ Perspectives
Aboriginal families with a child with a disability have contact with a range of professionals,
working in various areas of the education and health sectors. In order to canvass the views of
these professionals, a forum was organised where workers could meet and share ideas, while
providing essential information for the project. The goals of the Forum were to:
• Identify key issues in the provision of preschool and school level education, as well as the
support services required by Aboriginal children with a disability and their families.
• Identify possible changes to education and support service provision.
• Suggest possible recommendations that might be included in the report to the Minister for
Education and Children’s Services.
Aboriginal Students with Disabilities Report 9Organisational units and individuals who have experience with Aboriginal students with
disabilities were targeted for participation in the study. Organisations were encouraged to
nominate people working directly with families, rather than in managerial or policy positions.
Participants were invited to attend a one-day Professionals’ Forum, which was held in November
2002. Efforts were made to include a broad range of professionals that were working:
• with Aboriginal families in metropolitan, country and remote locations
• within the education, health and disability sectors across the State.
Approximately 45 people attended the Forum, including a significant number of people with an
Aboriginal background. A list of participants is included in Appendix 5.
The day was structured to build from an initial discussion of general issues. (See Appendix 5 for a
complete list of issues.) Participants were then grouped by locality or geographical area to
expand the general issues by identifying the changes necessary to improve support for
Aboriginal students with a disability.
As several key workers were unable to attend the Professionals’ Forum, these individuals were
interviewed by members of the Task Group, either in person or by telephone. A semi-structured
interview format provided a guide for the discussion, but also allowed a degree of freedom for
the professionals to focus on issues important to their work. These interviews were recorded on
tape. (See Appendix 6 for a list of professionals interviewed.) The content of these interviews, as
well as the qualitative data collected at the Forum, have formed the basis of the discussion in
Section 4.
One of the outcomes predicted for the project was the community building that inevitably
occurs when people meet to share their ideas and experiences. This occurred with families in
telling their stories, as well as the discussion groups that were formed at the Professionals’ Forum.
While it is not possible to measure these effects, it is hoped that as a result of new connections
developed through the project, support for Aboriginal students with disabilities will continue to
improve.
Aboriginal Students with Disabilities Report
10Painting by Christobelle Williams, Warriappendi School
3 Stories of Aboriginal Families
3 Stories of Aboriginal Families
Fourteen families agreed to tell their stories to members of the Task Group. Summaries of these
stories are presented in this section as a beginning in the understanding of Aboriginal
experiences in the care and education of children with disabilities. They should be read first, to
provide a very real context to the discussion of issues that follows (Section 4).
The two tables (below) illustrate the diversity of age, school setting, geographical area and
disability of the Aboriginal children involved in the study.
Table 1: Aboriginal Children by Age and School Setting
Early Childhood Primary Secondary Post School
0-4 yrs 5-12 yrs 13-18 yrs 19+ yrs TOTAL
Regular classroom 2 3 1 6
Special class 1 1
Special school 3 2 5
Early intervention centre 2 2
TOTAL 2 5 5 2 14
Table 2: Aboriginal Children by Geographical Area and Disability
Metropolitan Country Remote TOTAL
Cerebral palsy/muscular dystrophy 2 1 3
Learning difficulties/delayed language 2 1 3
Intellectual disability 1 2 1 5
Foetal alcohol syndrome 1
Autism Spectrum Disorders 2 1 3
TOTAL 7 5 2 14
In this Section, the following abbreviations have been used to describe the relationships that
exist within families, while protecting individual identity.
• ‘P’ for parent
• ‘C’ for child
• ‘M’ for mother
• ‘F’ for father
• ‘G’ for grandmother or grandfather
• ‘T’ for teacher
• ‘N’ for nurse.
Aboriginal Students with Disabilities Report 13Stories Story 1 Student with muscular dystrophy in regular classroom in local school (metropolitan) Story 2 Student with learning disabilities and a medical condition attending a special education class in a local school (metropolitan) Story 3 Student with cerebral palsy, attention deficit disorder, and mild to moderate intellectual disability in regular classroom in local school (metropolitan) Story 4 Student with autism in a special school (metropolitan) Story 5 Student with learning difficulty in regular classroom in local school (metropolitan) Story 6 Student with severe intellectual disability in special school and post school options (country centre) Story 7 Student with ataxia (cerebral palsy) and learning problems in a special school (country centre) Story 8 Student with autism in a special school (country centre) Story 9 Child with delayed language in early intervention centre (country centre) Story 10 Child with intellectual disability in early intervention centre (country centre) Story 11 Student with intellectual disability in regular classroom in local school (remote location) Story 12 Student with autism in special school in local school and partial home schooling (metropolitan) Story 13 Student with intellectual disability in regular classroom in local school (metropolitan) Story 14 Student with foetal alcohol syndrome in regular classroom in local school (remote location) Aboriginal Students with Disabilities Report 15
Story 1
P had her second child, a daughter (C) when she was still quite young, Student
having left school. Her daughter was born with a rare form of muscular
dystrophy with high physical needs. This meant that P had to ‘grow up and
with
do some hard work’. Despite her physical immobility, C has good mental muscular
ability. When it was time for C to go to school, P insisted she not go to a dystrophy
special school, but rather attend the same local school as her older son:
—
‘That was my big thing for her life, that she was going to be normal for as
much as possible’. There was much negotiation and organisation required regular
to make this possible and P felt she ‘had to battle the system and rock the classroom
boat a few times’. Attending the local school became possible with support in local
provided for toileting and hygiene, and the provision of a wheelchair from
Regency Park Centre. school
—
There was good communication with the local primary school and C’s
teacher helped her to fit in. From primary through secondary schooling C
metropolitan
always had a person at school to talk to her, give her support, and help her
catch up on her work. This was important since home life was hectic with
four children and her mother studying and working. C’s serious physical
problems lead to several periods in hospital.
In her early years, C’s disability took precedence over the issue of
Aboriginality in accessing support services. As P said, ‘The Aboriginality
wasn’t important to me: it was a child with a disability at the school who
needs a good education. That’s what I wanted’. P was just coming to
terms with her own Aboriginality, having discovered in her late teens that
her mother had been taken away. C had no contact with Aboriginal
students or teachers until she attended the homework centre at a primary
school twice a week: ‘It was a very social and very supportive environment
and we were with other Aboriginal people and it didn’t matter that she had
a disability. At the time it really helped us as a family as well as trying to
meet the day-to-day demands of four kids’. The homework centre helped
with homework and also relieved stress on the family.
P indicated little attention was paid to C’s Aboriginality in her schooling. She
did not learn about her culture and past, and links to others. C states ‘that
was one down side of school—they never really had classes that you could
do as an Aboriginal student to learn about the culture, which would have
been really good. I can honestly say I don’t know a lot about Aboriginal
culture because it was never offered to me’.
C was able to access Aboriginal tutoring support at secondary school. She
had individual support from a School Services Officer (SSO) who made sure
that C had everything she needed. She fetched things for her and
arranged for extra time on exams. This became more important as she got
older, since her classmates were less willing to help. The parents of other
students began to say that helping C was taking up too much of their
learning time. The SSO also arranged for C to attend the homework centre.
With the support of the SSO and staff at the high school, and with much
hard work and determination, C was able to achieve SACE.
University has been a struggle. C reports ‘I’ve basically dropped out of two
university courses because I couldn’t keep up: It’s not just the support at uni,
you need homework support. It’s hard when you’re at home by yourself
and you can’t turn pages in books and you’ve got ten times the amount of
books to read’.
When questioned, university staff told her she needed to provide support
herself. C’s needs were greater than what they could cater for. When
asked if she would like to return to university study, C replied ‘it would be
good if it wasn’t so physically impossible. It’s really distressing and it’s hard to
keep up; whereas before I’ve been able to because I’ve had that support’.
Aboriginal Students with Disabilities Report 17C is now attending an art society class once a week with intellectually
disabled people. The rest of the week she stays home in the supported
accommodation she shares with three other girls who are intellectually
disabled. P stated ‘it’s a bit of a challenge for us to try to work out what C’s
future is—whether she just does this, which is not a lot, or we find her
something to do at TAFE. We don’t know what the answer is’.
Story 2
P’s twenty year-old daughter C has severe learning difficulties that were first student with
identified in Year 3. When she was twelve years old she was diagnosed with
lupus, which gives her multiple ulcers on her legs and limited mobility. She
learning
has had treatment in a hyperbaric chamber off and on. Treatment can last disabilities
for six months at a time. and a
P found that C’s primary school did not cope very well with her daughter’s medical
disability and suitable programs were not always available. However, her condition
secondary school was excellent: ‘I got lots of support from her school and I —
was able to keep my sanity because of the programs and support network
they’ve got in place for her there’. P states that her school supported C as special
an Aboriginal student and as a student with a disability. There were several education
other Aboriginal students but C was the only one in a special education class
class. C was assessed, programs were arranged for her and taxi vouchers
provided. P states that the assessment process was very good and that she
in local
had no problems with the school. C attended Year 12 in a special school
education class. She then had hyperbaric treatment and missed her SACE —
graduation as a result. C is still upset about this.
metropolitan
Because of her learning disability, C is a client of Options Coordination. She
has completed a computer program, is IT literate and very good with
numbers. She has more difficulty with language and remembering things.
Accessing disability support for C was very frustrating for her mother. For
instance, she was given a huge wheelchair that was hard to put in her small
car. She has had contact with other Aboriginal parents with children with a
disability who have also found it difficult to access services.
C tends to become angry and has aggressive behaviour at times. She
resents her sister doing things she can’t. C is unable to stay on her feet too
long and the only outings she has are with Options Coordination or at family
functions. The medication for C’s lupus has caused her to gain weight:
‘Because of her size and all the drugs she is on, you lose your hair, your teeth
fall out—she’s had all her top teeth taken out, so there’s lots of barriers.
Living with that and trying to find out the networks is the difficult one’.
P believes it’s important to ‘catch these kids early’. She sees her daughter’s
secondary school as a model for programs for children with a disability: ‘The
door was always open and if there was an issue they were on the phone,
here or in Oodnadatta—wherever you went they would have rung. They
had their finger on the pulse’.
P stated that it is quite common in the Aboriginal community for people not
to acknowledge their child has a disability. Parents go into denial or don’t
come to terms with a disability. She felt that, years ago, having a child with
a disability meant ‘you either fostered it out or whatever, because it was a
real shame job; and coming to terms with that today in the Aboriginal
community is still a bit difficult’. P explained ‘we go into denial sometimes
and sometimes we leave it too long and too late’. P suggested that an
Aboriginal parent support network or group could be formed where families
could talk about their children with disabilities: ‘I’m sure we’d open up a lot
more and more of our kids would be able to access the appropriate
services’.
18 Aboriginal Students with Disabilities ReportP agreed some Aboriginal families have so many issues to live with, that part
of the denial is not wanting to cope with just another thing on top of living in
the community and being Aboriginal. Large families, alcohol, drugs and
long term unemployment ‘are impacting and so your life is just a roller
coaster all the time and a kid with a disability, you just pass him or her up as
one of the normal kids and that kid will cope. Whereas if that kid had
support and programs to meet their specific needs, they’d probably come
out quite OK in the end’.
C is now asking to do work experience. Her options are limited because of
the ulcers she gets. She can walk for a couple of months after treatment
and then is back in a wheelchair, so it’s difficult to establish something
concrete. P states ‘so she gets frustrated, I get frustrated and we all get
frustrated. It’s learning to cope and live with that stuff and if you’ve got
patience and if you haven’t got any other issues you can do that, but a lot
of our families have got lots of other issues that impact on their priorities.
And if your kid’s got a disability, I can tell you now it wouldn’t be one of
them’.
Story 3
C is eleven years old. His mother had only been in Melbourne for three student with
months when he was born prematurely at a community hospital. M
reported that at birth ‘he was twitching all the time and had jaundice. His
cerebral
head and body and lungs weren’t fully developed’. M was seen by a social palsy,
worker at the hospital who misinterpreted what M told him: ‘I stupidly said attention
“Oh yes, we argue” and of course he took it the wrong way and thinks C’s
deficit
father bashes the hell out of me’. Community Services talked to M and said
they wanted to keep her baby in the hospital and didn’t want her to take C disorder and
home. M put the baby in a pram and just left the hospital. Police came mild to
around to the house that she was living in with a relative, to try to get C moderate
back. A friend intervened saying ‘who the hell are you to try to steal this
baby from us. That’s what’s happening again, this has been going on for intellectual
years, like this is the 1990’s for god’s sake’. disability
C was transferred to a major metropolitan hospital after a week. M
—
reported from then on ‘things went beautifully, we were looked after, they regular
treated us like gold’. The doctors said that ‘C might come out with some classroom
kind of disability because of the twitching he had’.
in local
C’s mother and father moved to New South Wales and took him to a doctor school
when he was eighteen months, because he appeared lame when he —
started to walk. The doctor diagnosed cerebral palsy/spastic diplegia,
which mostly affects his legs, and a mild to moderate intellectual disability. metropolitan
He cannot do much walking and has had several operations. C was in a
therapy program at a centre in Newcastle and M stated ‘they were
wonderful. I still ring them to keep in contact about how he’s going,
because my cousin’s an occupational therapist and she was involved. She
put me on to all these people and to this place. Also the Aboriginal Liaison
there, she was really good’.
When he was 5 to 6 years old, C attended a school in Newcastle that had
ramps and other accommodations, and other children with a disability. C
was socially interactive there and would go up and touch the other children
in wheelchairs. M reported that there were ‘a lot of parent/teacher
interaction days and everybody just loved my child’. There were sand
dunes just by the entrance and sea air. There were several other Aboriginal
children and a whole room was painted with Aboriginal pictures. His
grandparents were very supportive and would come and pick him up
sometimes. C was happy there.
Aboriginal Students with Disabilities Report 19After several years apart, C’s mother and father got back together again
and decided to move to Adelaide where there was more work. F enrolled
C in a special school in Adelaide, which was close to where they lived. M
said ‘he went from freedom to gaol really and that was hard on us’. C
regressed in his toilet training, which had taken a long time to achieve, and
according to M, there was little at the school for him to do. M felt that C
was going backwards. When C stopped wanting to go to school, his
parents tried to find another place for him. His mother stated that the
special school tried to keep him and told them he would never survive in the
local school. It was the intervention of the Aboriginal Education Unit and
the support of the Family Advocacy Group that made C’s parents aware of
their rights and their ability to make the decision about C’s schooling.
Once his parents had made the decision, it took a number of meetings and
arrangements for C to transfer to a small class in a local school, with toileting
being a major issue. C is currently enrolled at this school, which has facilities
for wheelchairs, including ramps and non-slip mats. C’s sister also attends
the school. Transport is not available and C is driven to school by his father.
He has now been at this school for two terms and staff have been extremely
welcoming. C is settling in and working out the interactions with other
children. His mother has joined the governing council of the school. M feels
that he’s now being mentally stimulated: ‘He’s turned his lights on’.
Over the years, C’s parents have not agreed with advice from some
professionals. Hearing Impairment specialists have said he has a hearing
problem, but his father says that he just doesn’t respond to the cues. His
mother is quite angry about a report written by a school psychologist, which
she feels is very negative and did not recognise all of the things that C is
able to do.
C is on Ritalin and that helps his parents to manage him at home. C
receives support from a volunteer home tutor from his parents’ church. He
previously had an ATAS (Aboriginal Tutorial Assistance Scheme) tutor but the
two-hour block was too inflexible to take into account his ADHD. His parents
receive support through the Community Accommodation Respite Agency
(CARA) and C has regular outings with his carer, as well as weekends away.
C is provided with support from the Crippled Children’s Association and the
Variety Club has supplied him with a three-wheel bicycle. M is accessing
support to manage his behaviour at home.
Both C’s mother and father were adopted and they want their children to
have strong connections with the Aboriginal community: ‘We try and get
them to recognise who they are, that you’ve got to be proud of your skin
colour. It’s identity. Being Aboriginal you have to accept who you are and
be proud of who you are’.
Story 4
F was working in a goldmining town in Western Australia when his son C was student with
born. He noticed his son showed little emotion and so took C to a local
doctor: ‘The doctor said he was just slow’. While C’s mother agreed with
autism
this, F ‘knew there was something more. I was working night shift on a —
loader at three in the morning and I heard this professor on the ABC talking special
about autism and that’s how I knew C was autistic’. F considers C would
school
have been diagnosed and had access to support at an earlier age, if they
weren’t living in the bush in a mining town with just one doctor: ‘He was just —
a bush doctor who didn’t want to be there’. metropolitan
20 Aboriginal Students with Disabilities ReportF moved to Adelaide with C and took him to the Women and Children’s
Hospital where he had a number of tests, and was referred to the Autism
Association. C was diagnosed with autism when he was nearly five years
old. While C has had support from a speech pathologist from the Autism
Association in kindergarten, F feels funding cuts have meant that C has not
received as much support as he needed: ‘That’s the biggest problem, the
specialists get cut and it filters down to everybody. They did what they
could. When he was younger he could have had more hours from the
Autism Association but they couldn’t supply it, it’s as simple as that. The
hours had to be shared around because there’s a lot of autistic kids out
there’.
C is now nine and attends a special school. It was hard to get him into the
school because of a long waiting list. He attended a special unit in a local
school while waiting but ‘they weren’t really equipped for C’. F is very
happy with the support C receives at the special school: ‘He gets everything
down there. They’ve got a sensory room, trampolines, a pool for swimming
because it relaxes them, they get to use the muscles in their body. He loves
it. He knows when the school bus is coming and he loves going to school
there. He goes to shopping centres, they take him everywhere’. F says the
special school integrates the students with the primary school and
eventually integrates them into the high school, and he is happy with that
arrangement: ‘He’s only been there for a year or so, we’ll see how he goes.
But it seems like the right thing’.
F has 7 sisters and 3 brothers, so there is a large family to support him. F says
the children in his extended family are good with C: ‘They’re careful with
him, they watch him. They all play around and they’re all aware of the
need there. They try to get him into the games but they know what’s going
on. They always try but it’s very hard. If he wants to play he’ll get in there’.
F feels C is ‘mainly happy’.
The Autism Association has provided picture cards to use with C at home,
but according to F, C ‘uses them as he pleases; otherwise he just gets what
he wants by leading people by the hand. He just gets people to give him
what he wants. Sometimes it’s out of control’.
F believes that outside support from other agencies ‘really comes into play
when he’s in his teens like 12 to 13, when they go on camps with carers’. He
has not used them at this point because ‘C has such a big family, he goes
with them. Wherever C goes he is looked after, it’s all more or less me and
my family. You’ve got to supply the stimulation they need at home’.
Story 5
P’s daughter C has problems with coordination and specific learning student
difficulties. P noticed there was a problem with her daughter when she was
just starting to crawl and walk: ‘Her coordination and things weren’t right,
with a
things at young ages she should have been doing that I kept picking up’. P learning
reported she had received considerable help with C: ‘When she was in child difficulty
care staff picked up that there were problems and moved her on to kindy’.
—
P knew a special education worker and other people in education, and
they ‘pointed things out to me, so we were always aware of it’. She feels it is regular
helpful ‘when you know people a bit more’. classroom
When C went to school, P didn’t want to tell the teachers about C’s learning
in local
difficulties. She thought ‘let them see what’s happening and then I’ll speak school
to them’. P feels the school has been very good at getting her the support —
she needs through the sector’s Indigenous unit. She has a support worker
metropolitan
with her one-to-one and receives a lot of support at school.
Aboriginal Students with Disabilities Report 21C is involved with many activities at school: ‘Just different things. We try to
get her help with the coordination, so she swims, does netball and all those
things. It’s really to get her focusing’. P is happy with the way things are
going for C. She describes her as very sociable and quite confident in many
areas. P feels the support she has received has given her the confidence to
cope.
P took C to an occupational therapist for a while, to help with her
coordination and her ability to focus her attention. This proved effective. C
then went to a group at a hospital where the assistance was not as intense.
According to P, she stopped going because ‘it just wasn’t worth it. What
they were doing there she was basically getting at school anyway’.
P believes that C will probably need extra tutoring support once she
reaches high school: ‘As time goes on and she gets into high school, she’s
going to need assistance because she can’t retain things. It’s so different
when they go to high school. Teachers are very different at high school too,
they’re not as focused on kids’.
P stated that her children haven’t really grown up with Aboriginal people or
a strong Aboriginal cultural background. The Aboriginality comes from her
mother’s side; her relations are in New South Wales. They don’t see them
often: ‘But they know their heritage and they’re quite proud of it and they
tell everybody, which is great’.
P stated that she does not have high expectations of C, as long as she can
‘get along and she can read and she’ll be able to get herself a job. I don’t
really care what job she does. Then she can move on and have a normal
life like everybody else’.
Story 6
C is a seventeen year-old Aboriginal student who is non-verbal and has very student
low intellectual ability. Over the years she has lived with her mother and a
long term foster mother. When M was pregnant she needed support in
with
lifting C, since she had lost a baby previously: ‘I approached Options severe
Coordination and they gave me two choices—she either stays home with intellectual
me and I put up with it or she goes to Berri to live, so she went to Berri for
disability
twelve months. I don’t drive and I don’t own a car, so every holiday I had
to find a way to get down there to pick her up, and find another way of —
getting her back there’. special
In Berri, C lived in a house with other children. M planned to move there school
and have her on weekends ‘but unfortunately that closed down’. C has and
lived for some years with a foster mother but has now moved back with M, post school
since her foster mother has become ill. A fence is needed around the yard
of M’s house to accommodate C’s tendency to wander. M has asked for options
this and is frustrated because there has been delay in providing it. M also —
has concerns about the provision of respite care. She is promised things and country
then they do not happen. M believes things could have been made easier
for her: ‘They find funds when they want to find funds’.
centre
M does not believe that there have been any racial issues in her problems
accessing services, nor in the school or the community. Aboriginal service
providers also have not provided the support she wanted and ‘haven’t
contributed to my knowledge or anything’.
C attends a special school in a country centre. M believes much of the time
C ‘just potters around’ at school, spending much of her time in the
relaxation room and that ‘she’s been put in the too hard basket’. M has a
computer at home and she would like C to be able to use the same
program at school: ‘Even though she is non-verbal, we can see with the
visual stuff how much she does know’.
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