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Transcript of Amanda Webster€¦ · Amanda Webster Empowering parents ... •key areas that need to be addressed...
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Amanda Webster Empowering parents as advocates with schools
Empowering Parents as Advocates with Schools
Dr. Amanda Webster University of Wollongong
Autism and Inclusive Education
Problem
– Parents struggle following their child’s diagnosis to
prioritise needs and select best service.
– Parents feel pressure to select best programs and
interventions to help their child.
– Majority of children with ASD in mainstream
schools. School is primary support mechanism for
children with ASD from 5-17 years.
Problem
– Education planning is led by school. Many parents report issues with planning including:
• No plan in place
• Irrelevance of plan and goals
• Excluded from planning process
• Failure to follow plan
– NDIS will require planning for individuals
– Need plan that is comprehensive and addresses child’s needs in all environments and as they grow
Satisfaction with School
• Overall low rating.
• Highest – knowledgeable about education program
• Lowest
– Choice
– ASD specific content
0.00%
10.00%
20.00%
30.00%
40.00%
50.00%
60.00%
70.00%
80.00%
90.00%
100.00%
I had
en
ou
gh in
form
atio
n t
o…
I was
ab
le t
o c
ho
ose
th
e t
ype
of…
The
sch
oo
l/se
ttin
g is
do
ing
we
ll in
…
My
child
fe
els
sett
led
at
his
/her
…
My
child
is m
akin
g go
od
pro
gre
ss…
I am
sat
isfi
ed w
ith
th
e w
ay m
y…
My
child
loo
ks f
orw
ard
to
/go
ing…
I am
kn
ow
led
geab
le a
bo
ut
my …
I am
kn
ow
led
geab
le a
bo
ut
wh
at…
I am
kn
ow
led
geab
le a
bo
ut
my…
I am
sat
isfi
ed w
ith
th
e …
I fee
l th
e sc
ho
ol v
alu
es m
y …
I fee
l I p
lay
an e
qu
al p
art
in m
y …
I fee
l th
e sc
ho
ol i
nvo
lves
me
in …
I fee
l th
e sc
ho
ol i
nvo
lves
me
in …
I fee
l th
e sc
ho
ol p
rovi
des
…
I fee
l my
child
’s s
cho
ol r
epo
rts …
I am
sat
isfi
ed t
he
sup
po
rt m
y …
I am
sat
isfi
ed w
ith
th
e kn
ow
led
ge …
I am
sat
isfi
ed w
ith
th
e kn
ow
led
ge …
I fee
l my
child
’s t
each
er(s
) is
…
I am
sat
isfi
ed w
ith
th
e su
pp
ort
…
Positive
Negative
After enrolment
Pre-enrolment
Obtained formal diagnosis
Difficult to find a school
Difficult to receive support
Difficult to find another school
14
77
1. Positiveexperience
2. Negativeexperience
Enrolment Experience
Lack of support – highest
negative
• Lack of planning
• Insufficient resources
• inflexibility
10
1
6 3
50
1 2 3 7
5
School structure - Negative
Parent Involvement
• Formal meetings (65)
• Informal communication (39)
• Involving other professionals (7)
• Limited involvement – 63
– Parents often felt they were not included in meaningful ways and their input had not been
Parent Involvement
Walked into an IEP meeting. Plan put up on screen with a different child’s name on it. Given to me to sign and when I pointed out that it was someone else's the name was typed over and handed back to me. I asked to go through it and I pointed out that my child had none of the issues listed. Big sigh from special ed coordinator... had about 3 minutes to change some of it. None of these addressed in 18 months of being there.
I don't have much involvement. I offer suggestions and they say they need to follow the set curriculum
Empowering Parents of Children with ASD Project
Aim - To develop and refine a
model to empower parents
through knowledge building and
ongoing expert and peer support Knowledge and Skills in Key Content
Areas
Cycle of Learning (Education Planning
Advocacy
Best Practice in School Settings
Findings
• Almost all parents gained significantly in confidence as decision makers
• Many parents increased confidence in building self-awareness and self-advocacy of children.
• Most parents felt more empowered as advocates.
• Parents felt needed ongoing support to advocate to manage changing issues with schools.
• Some parents have empowered and knowledgeable to act as facilitators for parent advocacy and negotiations with schools.
• This shows promise in increasing outcomes for parents and children.
Involves…
• assessing personal power and taking control over one’s life.
• the belief in your ability to achieve outcomes.
Empowerment
• Advocacy means….”having a voice”.
• Advocacy by families - “A non-violent empowerment and support process, through which families … can constructively express dissatisfaction and contribute to creative solutions to problems” (Munro, 1991, cited in Nachshen & Jamieson, 2000, p. 39).
• Involves:
– Clarity of purpose
– Educating yourself
– Educating others
– Persistence (Wright, 2014)
Advocacy
Clarity of Purpose
1. Work with your child to establish a clear plan for their future –
– create a vision for next 3 years
• Dream
• Assets, Barriers and priorities
– Assess child’s current strengths and needs
– Set goals – measurable outcomes
– Identify strategies/practices/instruction
– Means of evaluation
Cycle of Learning Future
Vision
Barriers and Priorities
Assessment
Interests, Strengths, Needs
Set Goals
Deliver Instruction
Evaluate Learning
Developing and Articulating a
Clear Plan
Future Vision
Future Vision
Barriers and Priorities
Dreams, activities and
experiences you and
your child want to have
in the next 3 years. Establishes the
outcomes that are
most important to
the individual and
others who
support them.
Vision Statement
• Is NOT… a list of skills the child needs.
Communication skills Social Skills
Toileting skills Eat more
Fine motor
Is a statement of the desired experience and
opportunities that determine what skills are needed. –
Its why certain skills matter. Make a friend
Get a drives license Play soccer
Go to university Go to high school with my friends
Get a job in computers Get a horse
Read Harry Potter Win the mindgame tournament
Get a good grade at school Be successful at school
Go to school all day
Assets
• What interests, skills, or current supports will help your child achieve their vision?
– Love sports
– Bike rider
– Keen reader
– Good friend
– Family business
Barriers
• Identify what will prevent your child from achieving the vision – Lack of skills
– Environmental factors
• Critical to collaboration and negotiation with schools.
**This can be expressed as a mismatch between the individual’s characteristics and the demands of the environment.
Priorities
• key areas that need to be addressed to overcome barriers.
– Skill building
– Creating Environments
• Long-term goals
• Key outcomes to address.
Building Self-advocacy
Involving child in vision and planning promotes self-determination including:
self awareness,
Self-advocacy
Problem solving
Goal Setting
Self-management
Building Self-advocacy – Key Questions
What is my dream?
• What will help me achieve this?
• What will prevent me from achieving this?
• What needs to happen for me to achieve my dream? What do I need to learn? What supports do I need?
• What are my interests, strengths and difficulties?
• What is the first goal I can focus on to move towards my dream?
• What actions can I take? How can others help me?
• How will I know if I have achieved my goal?
(Based on SDLM by Wehmeyer, Palmer, Agran, Mithaug, & Martin (2000)
Educating Yourself
Child-centred Focus
Redefining Support
Policy, Curriculum and Rights
Effective practice in
schools
Educating Yourself
• What are the policies and frameworks that impact your child?
– Disability Discrimination Act
– Disability Standards for Education 2005
– Australian Curriculum
– State curriculum and policy
Redefining Support
• Whole School Approach - Student-centred inclusive culture and practice
– Personalised Learning
– Universal design for learning
– Differentiated practice
– Three tiered approach to support (PBS, RTI)
– Embedded in core practice of school
Educating Others
• Help them get to know your child and your family, what is important and what can be let go.
• Focus on the vision, barriers and priorities
• Focus on the match/mismatch between your child’s individual characteristics and the environment.
• Use the Intervention Ziggurat system to help shape the conversation.
Persistence
• Use the chain of command. Take it to the next
level.
• Be aware of department policies and use them.
• Build your child’s self-awareness and self-
advocacy.
• PRAISE and REWARD good practice.
• Keep calm. Regroup and move on when needed.
• Take care of yourself.
• Make the dream, barriers and priorities for your child the focus of the conversation. -
– Find a point of agreement on the barriers and priorities
– Throw out lots of options that can address these.
• Recognise the different perspectives people bring to the conversation.
– how can you help each other?
– What is really important and where can you compromise?
Negotiating the Best Support – Are you having the right conversation?
Tensions between Individual and Group Curriculum
Reflect Perspectives of Parents and Teachers
Group - Curriculum-based
Indiv
idual -
(pers
onal/socia
l,
com
munic
ation,
self
managem
ent)
• Be knowledgeable about good practices and strategies
• Discuss options that can be embedded in core practice of school.
• Focus on needs and teaching, not placements, programs or personnel.
• Don’t talk about money until you have agreed on key priorities/goals and explored different options for strategies.
Negotiating the Best Support – Are you having the right conversation?
• Don’t rely on teacher aid or 1:1 as a “support”. These are facilitators of greater strategy.
• Make sure you have the right people in the conversation.
• Keep your focus on the child not on the program.
• Don’t go silent.
• Celebrate the positives!
Negotiating the Best Support – Are you having the right conversation?
For more information:
Amanda Webster
University of Wollongong
Senior Lecturer, Autism and
Inclusive Education
Questions
• What is your perspective as an (individual on the autism spectrum, parents, school leader/teacher) about the vision for students on the spectrum in schools and learning programs?
• What do feel are barriers for students on the autism spectrum in schools?
• How do you think we can bring together parents, school staff and students on the autism spectrum to engage in productive conversations in order create a shared understanding of values and practices that will help students on the autism spectrum to achieve in school settings and learning programs?
• How do you feel we can support parents to advocate for their child?
• How do you feel we can support individuals with ASD to develop their self-determination in order to construct their own learning and to self-advocate for any needed supports in school and beyond?
Barriers for Autistic Children Anxiety – A child's view
'Staring eyes at me'
[Image description] Girl enters classroom and is
confronted with a room full of eyes staring at her
• Classroom anxiety (severe social anxiety)
Schools must improve the interpretation of behaviours of Autistic
students in the context of Autism
• Negative effect of eye contact when anxious
• Forced eye contact will not do either the individual or the teacher
any favours
• Troubleshooting; What is this behaviour communicating in the
context of Autism? Rather than the context of Neurotypical
children. Naughty, defiant, disrespectful, not listening, rude.