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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%

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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

Effective practice in school settings

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.

Intervention Ziggurat

Aspy and

Grossman, 2011

Persistence

• Find someone who shares your goal.

• Bring an advocacy mentor with you.

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

awebster@uow.edu.au

Panel

• Dr. Emma Goodall

• Stacey Smith

• Brooke Briody

• Mr. Chris Varney

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?

Dr. Emma Goodall

SA DEPARTMENT OF EDUCATION AND CHILD

DEVELOPMENT

Ms. Stacey Smith

SISTERHOOD OF THE AUTISTIC GIRL AND SISTERHOOD

OF THE AUTISTIC WOMAN

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.

Ms. Brooke Briody

CAMPUS PRINCIPAL, NORTHERN SCHOOL FOR AUTISM

Mr. Chris Varney

CEO I CAN NETWORK