Disability education, self advocacy

A story of friendship and impact

by Iva and Julie

Hello everyone

Today we would love to talk about

  • our friendship
  • inclusive research

Since we started to work together

  • our friendship has grown
  • we have learned a lot from each other
  • we support each other
  • we play to our strengths

We have many things in common

  • we have our differences

It would be boring to always agree on things

We both want to make the world a better place

  • for people with intellectual disability

We would like to see more people with intellectual disability

  • being researchers
  • having a say in things important to them

There are many barriers for people to do that.

Many people with intellectual disability

  • are still excluded from community
  • do not have a say about what they want
  • other people make decisions for them

This is why self-advocacy is important

  • for people with intellectual disability

Self advocacy helps people to

  • have a voice in matters important to them
  • make decisions about their lives
  • have choices
  • take risks
  • know their rights
  • develop skills

Inclusive research can support people

  • develop self-advocacy skills

It is important for

  • university researchers
  • researchers with intellectual disability

to work together in inclusive teams

Iva and Julie together in a video

We hope you like the video of our story

Awards, self advocacy

New Gene Equal website

by Iva and Julie

Hello everyone

Today we would like to introduce:

  • a new website.

The website is

www.GeneEQUAL.com

GeneEQUAL is a research program to

  • help people with intellectual disability
  • get better health care

Our research team is inclusive.

We have researchers from universities

We also have researchers who have intellectual disability

And researchers with other different disabilities (hearing disability, multiple sclerosis, etc.)

What we want to happen

  • People with intellectual disability make decisions about their genomic health care
  • Genomic health care workers:
    • are respectful
    • provide accessible and inclusive health care to people with intellectual disability
  • Teachers in schools give people with intellectual disability accessible:
    • information
    • resources about genomics in health

We do research in:

  • health
  • education

In health we talked to

  • 19 people with intellectual disability or learning disabilities
  • 9 Support people

We will put our Easy Read report

  • to our website soon

And we have great news!

NSW Health gave us funding to develop

  • 3 more resources
  • 2 videos
  • Easy Read documents

We will also

  • Hold consultations with our advisors
  • Write more articles 

Have a look at our website to learn more!

For example about talking to teachers in schools

You can also find on the website:

  • Good resources
  • How to get in touch with us

The team members are

Dr Emma Palmer

UNSW Sydney/UNSW Health

Professor Iva Strnadová  UNSW Sydney

Julie Loblinzk                 UNSW Sydney / SAS

Jackie Leach Scully       UNSW Sydney

Skie Sarfaraz                  SAS

Jackie Boyle NSW Health

Michelle Tso                   UNSW Sydney

Manjekah Dunn              UNSW Sydney

Sierra Classen                UNSW Sydney

Joanne Danker               UNSW Sydney

Bronwyn Terrill​     UNSW Sydney

Karen-maia Jackaman​   UNSW Sydney

self advocacy, Uncategorized

Good life comes with self-advocacy

by Iva and Julie

How can self-advocacy influence well-being of people with intellectual disability: international program of research

Easy Read report

Hello everyone!

It has been a while since you heard from us.

This is because:

  • Iva was in Europe
  • Julie was ill

But we are back now.

  • and we have a lot to share with you.

Today we want to talk about our

  • ongoing self-advocacy and wellbeing research work

Well-being is about

  • how you feel about your life
  • how good it is

Here is a link to a research brief about it:https://www.unsw.edu.au/content/dam/pdfs/unsw-adobe-websites/arts-design-architecture/education/research/project-briefs/2022-07-06-ada-impact-of-self-advocacy-on-the-well-being-of-people-with-intellectual-disability.pdf

There are researchers from different countries that we work with.

Our team is from:

  • University of New South Wales Sydney, Australia
  • Open University (Milton Keynes), United Kingdom

We want to understand how self-advocacy

  • helps against discrimination
  • supports inclusion of people with intellectual disability

We did 2 studies

  1. We read articles about
  • self-advocacy
  • how it helps well-being

2. We talked to 54 self-advocates in Australia and the United Kingdom

  • 26 women
  • 28 men

To do this, we used something called the ‘dynamic model of wellbeing.’

This model shows us that having a good life is about different things.

It is about your:

  • physical and mental health
  • confidence and self-esteem

  • social life – things like work
    • work
    • money
    • relationships

What we found out in our studies

Self advocacy

  • improves how people feel about themselves and their live
  • helps people have more self-esteem
  • helps people to learn new things
  • helps people to speak up for themselves
  • helps people celebrate their strengths

supports peple to connect to the wider community.

Why is this important?

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, 2006) says people with disabilities have rights to

  • active participation and inclusion in the community

168 countries in the world signed this.

Who is doing this Research?

  • Iva Strnadová

Professor of Special Education at the University of New South Wales

  • Liz Tilley

Senior Lecturer & Associate head of school in Health and Social Care United Kingdom

  • Joanne Danker

Lecturer in Special education at the University of New South Wales

  • Julie Loblinzk

Adjunct lecturer, Self Advocate in NSW

  • Michelle Tso

PhD student in special education at the University of New South Wales

What is next?

Open University is doing research to look at who pays for self-advocacy and why.

For more information about this, email

Iva

  • i.strnadova@unsw.edu.au

self advocacy

Self-advocacy and group homes

by Iva and Julie

We often talk about the importance of self-advocacy.

In one of our previous blogs we shared evidence that self-advocacy improves people’s lives.

Yet, not everybody know how to advocate for themselves. People might be also scared to do so.

Self-advocacy should be taught at school. But many students with intellectual disabilities do not learn how to advocate for themselves at school.

And the situation is not better for adults with intellectual disabilities. In this blog we want to focus on people with intellectual disabilities living in group homes.

Julie’s reflection:

  • I attend country music every Tuesday night.
  • My role was a Master of Ceremony.

  • A group of people living in a group home often came.
  • They had a dinner, sang, and left without listening to other singers
  • One client asked for support from me to help him to stay longer.
  • I talked to staff members who supported them. But they said they all have to leave as their shift is changing soon.
  • I contacted the group home a number of times and we will have not gotten anywhere.
  • I officially complained at that group home.
  • I also offered self-advocacy training for the people living in that group home.
  • Nobody ever responded to me.

I am lucky as I am independent and arrive and leave as I want.

Iva’s reflection:

  • I worked in a group home for seven years.
  • I supported adult women with intellectural disabilities and autism.
  • The staff there were very dedicated and supportive of the women.

  • But there were limited opportunities for choice and decision making.
  • Everybody had to get up and go to sleep at the same time.
  • There were limited choices of activities.
  • And there was limited privacy for the women living in the group home.

This is what the Royal Commission in Australia heard about group homes:

  • Limited privacy of people living in group homes
  • People being stopped from doing things they want
  • People being tied to a chair
  • Locked fridges and doors
  • Giving people with intellectual disabilities medications to make them sleepy, tired or quiet

People in group home experienced:

  • Been taken advantage of
  • Not being helped as they should be
  • Being treated badly
  • Being hurt physically

This should not be happening.

We have disability laws in Australia and the UN Convention of Rights for people with Disabilities.

We are happy that things have changed and we have come a long way.

But there are still changes needed to support people with intellectual disabilities.

How can self-advocacy be brought to group homes?

We are looking forward to hearing from you.

Disability writing

Self advocacy organisations improve people’s lives

by Iva and Julie

We are excited to share with you an Easy Read summary about how self-advocacy organisations impact people’s lives. Please read this document, which shows that self-advocacy organisations help people with intellectual disability to live good lives. This is a good resource that we can use to advocate for more support from governments for self-advocacy organisations. You can find the full article here: https://onlinelibrary.wiley.com/doi/10.1111/jar.12752

easy read document on value of self advocacy organisations.
Easy Read document on self advocacy