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

Disability education, Rights, self advocacy

My Say My Way

by Iva and Julie

We are so excited to share with you My Say My Way

My Say My Way is

  • A collection of accessible methods
  • For students with moderate and high support needs
  • In New South Wales, Australia

My Say May Way was developed in 2020-21 by

✓ NSW Department of Education

✓ University of New South Wales Sydney

✓ 24 schools in New South Wales

My Say My Way uses three types of methods:

1. Photovoice

✓ Taking photos of things students like and dislike at school

✓ People, places, actvities, experiences

✓ Click here to watch a few videos showing Photovoice

2. Body Mapping

  • Using a map of their body filled with

✓ Images

✓ Words

✓ Symbols

3. Adapatable Survey

✓ About school experiences of students with moderate and high
support needs

✓ There are 3 versions for students with different support needs

Questions students were asked

✓ What they liked

✓ How they learnt

✓ What they learnt

✓ Relationships with school staff and other students

✓Life after school

How many students took part?

✓   Survey Version 1 was completed by 49 students from 15 schools

✓    Survey Version 2 was completed by 121 students from 21 schools

✓    Photovoice and Body mapping was completed by 138 students across 19 schools

What we learnt from the survey – positives

✓   Teachers help students

✓   Students like learning new things at school

✓   Most students liked their school
✓ Students felt they were doin well at school

What we learnt from the survey – things to improve

✓ Only about half of the students knew their learning goals

✓ Only about half of the students were involved in setting their learning goals

✓ Many students felt bored at school

✓ Some students disliked feeling scared and being yelled at

What we learnt from Photovoice and Body mapping – positives

✓      Students most liked physical activities at school

✓      Students enjoyed leisure and toys at school

✓     They also liked academic classes and learning activities

My Say My Way

o Addresses an important gap

Why?

o These students usually do not have a say about their education

o This happens all around the world

o My Say My Way gives these students a voice

My Say My Way supports inclusion

✓ Supporting students to have a voice is important

✓ It will help them to speak up for themselves

Our Thoughts

ALL students

o   Should be able to have a say

o   Need to be a part of setting their goals

o   Learn differently and in different pace, and that is OK

o   Need time to complete their work

Teachers and other school staff

o   Need training in accessible methods

o   Should also use plain English and Easy Read English

o   Have enough time in their workload to support their students


We are very proud that we were a part of this fantastic partnership

o  That created My Say My Way

For more information go to:

https://education.nsw.gov.au/teaching-and-learning/disability-learning-and-support/our-disability-strategy/initiatives/key-research/student-voice

Please share with us your comments and questions

o   We would love to hear from you

GeneEqual, self advocacy

GeneEQUAL update

by Iva and Julie

GeneEQUAL will make genetic health care better for people with learning and intellectual disabilities.

We want to hear from you!

Where we are up to:

  • The study has ethics approval to start across NSW.

A committee was formed with:

  • Our team
  • NSW Ministry of Health
  • Doctors
  • Researchers
  • Advocates and self-advocates with intellectual disabilities
  • 12 people have been interviewed by Iva and Julie
  • We want to talk to 8 more people

We had an Advisory Workshop in November.

People in the workshop:

  • Shared that learning about genetic conditions can be a big shock.
  • Thought it was important that counselling to talk about feelings is available
  • Mentioned some problems with NDIS
  • Said doctors and genetic counsellors need to know how to check in with people
  • Suggested that people need help to prepare for seeing a genetic doctor.
  • Agreed that genetic research is important.

We will have another Advisory Workshop in February.

Who can join GeneEQUAL?

People who:

  • have learning and intellectual disabilities
  • live in NSW
  • had a genetic test or talked to a genetics team recently
  • had a genetic test of talked to a genetics team a long time ago, like when they were a child

Want to have your voice heard?

  • Please contact Iva and Julie and they can tell you more!
  • Email i.strndova@unsw.edu.au
  • Mobile phone: 0426 959 172

“You need to have a group where we can all sit down and talk, and we work out our own problems.

Not have someone else work our problems out, because I can tell you now, we don’t listen to what people think.

It’s what we know, what we’re going through, and how we can deal with it.”

Disability education, self advocacy, Sexuality education

What do girls with intellectual disability think about sex education?

by Iva and Julie

This is an Easy Read report from our study.

What was this research study about?

What girls think about their sex education?

Sex education in New South Wales (Australia)

  • Required up to Year 10
  • Taught as part of a subject called the Personal Development Health and Physical Education (PDHPE)
  • Year 11 and 12 students take part in Life Ready program
  • Life Ready program includes:

financial knowledge

public engagement

online safety

mental health

sexuality and sexual health

  • Some students access the Life Skills syllabus.

What we already know from research.

Sex education is important for all students.

Students have a right to:

  • sex education
  • receive information in accessible ways.
  • have social and sexual experiences

Sex education also helps with a successful move to life after school.

Who was in our research team?

  • Iva Strnadová, University of New South Wales Sydney (UNSW)

  • Julie Loblinzk, UNSW and Self Advocacy Sydney
  • Joanne Danker, UNSW

Who took part in this study?

We talked to 11 Australian high school girls aged 13-20 years.

  • 7 girls attended a mainsteam school.
  • 4 attended a support unit in a mainstream school

How did we do our research?

We prepared questions for interview.

We met the girls at their schools and interviewed them.

We reviewed what the girls told us.

What did we find out?

Finding one

Topics not included in sex education:

  • different sexuality and gender identities
  • masturbation

Why does it matter?

  • Girls do not have good knowledge about sexuality.

Sex education classes were not accessibel for the girls.

Finding 2

Why does it matter?

Students with intellectual disabilty:

  • learn at a slower pace
  • have problems with abstract ideas
  • struggle with difficult words
  • have problems with memory

There are different teaching stragegies and practices to helo these students:

  • pictures
  • Easy Read resources
  • accessible language

Finding 3

The girls were:

  • not asked what they would like to learn
  • often included in Individual Learning Plan meetings.

Why does it matter?

Individual Learning Plans should be prepared by:

  • students with disability
  • teachers
  • parents

other people (e.g., speech therapist).

Taking part in creating their own plans helps students to:

  • develop their self-determination skills )eg making choices.
  • develop independence

For more information please contact:

Iva Strnadová: i.strnadova@unsw.edu.au
full paper:

https://onlinelibrary-wiley-com.wwwproxy1.library.unsw.edu.au/doi/10.1111/bld.12403

Disability education, Disability writing, self advocacy

Many benefits of mobile technology for people with an intellectual disability

by Iva and Julie

We are excited to share with you an Easy Read summary about our research called:

Mobile Technology as a Tool to Increase Social Inclusion of People with Intellectual Disabilities

Please read this document.

It shows that mobile technology can help pepole with intellectual disability to feel more included.

You can find the full article here:

https://onlinelibrary-wiley-com.wwwproxy1.library.unsw.edu.au/doi/10.1111/jar.12869

What was the research study about?

We wanted to find out:

  • What mobiles devices and apps are used on smart phones and other devices.

  • Mobile devices are smart phones, tablets and laptops.
  • Apps are applications on devices, such as a Facebook app, Google maps app.

  • how things like age and gender make a difference
  • who you are and
  • how you use devices and apps
  • impacts on how you feel included

In research we call this social inclusion. Social inclusion is about:

  • relationships with other people
  • participation in the community

Participation includes:

  • work
  • social activities

Social inclusion is about being connected with:

  • family
  • friends
  • work

What we already know from research

Devices and apps can help with life skills

Some people with intellectual disabilities

  • don’t have many friends
  • feel lonely

Relationships of people with intellectual disabilities are made up of:

  • family members
  • workers

Who was in our research team?

The researchers were from:

  • University of New South Wales
  • Self Advocacy Sydney Inc
  • Iva Strnadová and Julie Loblinzk
  • Andrew Martin and Terry Cumming
  • Joanne Danker

We also had 5 advisors from Self Advocacy Sydney.

  • Peter Locker
  • Joe Refalo
  • Robert Strike
  • Allan Gittoes
  • Bruce O’Brien

We also had one independent advisor

  • Sam Hurd

Who took part in this study?

114 people with intellectual disabilities

Half were female

About half of them receive a disability support pension

How did we do our research?

We developed an accessible survey.

People filled out the survey.

We reviewed answers people gave us.

What did we find out?

Finding 1

Participants who made their own decisions:

  • what devices/apps they use
  • how often they use them
  • when they use them
  • had positive connections with:
  • family
  • friends
  • work/volunteering

Positive connections means to:

  • stay in touch
  • do things with others
  • feel a sense of belonging

Why does it matter?

People need support to make decisions:

  • what devices/apps they use
  • how they use them
  • when they use them

Finding 2

Participants who used devices/apps more often, had more positive connections with:

  • family
  • friends
  • work/volunteering

Why does it matter?

If people use devices/apps more often, it increases:

  • competence
  • confidence

It helps to use devices/apps to make and keep social connections

Finding 3

Participants who used more devices/apps had more positive connections with:

  • family
  • friends

Why does it matter?

Using more than 1 or 2 apps helps connect people to:

  • more family members
  • more friends

Using only 1 or 2 apps means some relationships are:

  • not possible
  • more difficult to make and sustain

Finding 4

Older participants were more likely to make their own decisions about:

  • what devices/apps they use
  • how they use them
  • when they use them

Older participants:

  • needed more help to use mobile devices/apps
  • used fewer devices/apps to connect with family and friends

This meant fewer social connections.

Why does it matter?

Many older people make their own decisions about using devices/apps.

They may need support about the best devices/apps to be socially connected.

Apps most commonly used:

With family:

  • mobile phone voice calls (92%)
  • text (78%)
  • Facebook (60%)
  • You Tube (32%)
  • websites (27%)
  • Facetime/Skype (26%)

With friends:

  • mobile phone voice call (83%)
  • text (75%)
  • Facebook (58%)
  • You Tube (26%)

At work:

  • mobile phone voice call (64%)
  • text (56%)
  • Facebook (33%)
  • websites (30%)

Disability writing, self advocacy

Reflecting on 2020

by Iva and Julie

This was a hard year for everyone

COVID-19 showed some negative and positive things.

Some negatives

  • People with intellectual disability have been more isolated.
  • They are also more vulnerable to COVID-19.
  • Not many people with intellectual disability have access to internet and technology.
  • Some people with intellectual disability have access to technoloyg and internet but do not have support to use it.

Some positives

  • Everybody had to learn to use technology very quickly.
  • Technlogy allowed some people with intellectual disability to connect with others.
  • That helped to overcome loneliness.
  • It showed that technology can be used by self -advocacy organisations to support others.

There is a Royal Commission in Australia. This is positive as people with disability can have a voice.

This is a chance to change things for the better.

But it is also a negative:

Violence and abuse happened so much to people with disability that this Commission was needed.

What we found difficult this year:

  • We were not able to see each other and work together in person.
  • We struggled with technology.
  • We could not present at confeerences, as planned.

What worked for us this year:

  • We used FaceTime, Zoom and Workplace to see each other almost every day.
  • We were able to work together online.
  • We were able to work with others.
  • For example we created a video about self-advocacy.
  • This was done with Jan Walmsley and Liz Tilley from Great Britain.
  • We continued data analysis with Joanne Danker, Michelle Tso and Brydan Lenne (thank you ladies.)

We have been working with the Department of Education on a project.

It aims to give voice to people with high support needs.

See this link for more.

https://education.nsw.gov.au/teaching-and-learning/disability-learning-and-support/our-disability-strategy/latest-news/unsw-joint-venture-to-help-department-hear-students–voices

  • We piloted together with IDRS their Rights and Relationships program at Matraville High School.

(thank you Jessica Mooney and the team, Janene Cootes, Ben Garcia-Lee, Liz Dore, Joanne Danker, Alison Carter and Rosemary Malouf).

It was a great success.

  • We started to work with Mary O’Malley and created our blog.
  • Julie was a guest speaker in Iva’s courses via Zoom.

This was a new experience for us.

We did both pre-recorded and live lectures.

It was a hard year but we have a lot to be thankful for.

It was the year when Julie received the National Award for Disability Leadership in Change Making.

What are our plans for 2021?

  • Continue our blog – hopefully more frequently.
  • Share our blog with more people.
  • Continue our research work. We have many projects together
  • We will continue working with IDRS.

Their Rights and Relationship program is fantastic. We want to bring it to schools.

It will help students with intellectual disability to learn about rights, relationship and sexuality.

  • Finish writing our book.

It is about girls and women with intellectual disability.

  • Edit together with Mike Wehmeyer a special issue about transitions.
  • This is for the British Journal of Learning Disabilities.
  • We will present at conferences.

So stay tuned!

There is a lot you will hear about from us next year.

Thank you for reading our blog and writing to us.

It means a lot.

Merry Christmas and a Happy New Year.

Disability writing, Mental health and wellbeing, self advocacy, Uncategorized

International Day of People with Disability 2020

by Iva and Julie

About International Day of People with Disability:

This Day is held on the 3rd December each year.

This is a United Nations day to celebrate across the world.

It aims to increase:

Public awareness, understanding and acceptance of people with disabilities

Celebration of their achievements

The day is about breaking down barriers.

These barriers can be:

Physical (e.g., ramps for people using wheelchair)

In people’s attitudes

Theme of this day for 2020 is:

Building Back Better: Toward a disability -inclusive, accessible and sustainable post COVID-19 World.

Suggestions for everyone to think about:

COVID-19 pandemic showed how much this Day is needed.

According to the Royal Disability Commission:

no Australian Government agency made ‘any significant effort’ to consult with people with disability during the beginning of COVID-19

People with disability had troubles to get:

Supports and services

Food

Medicine

Information

Personal protective equipment (e.g., face masks, gloves).

This is not good enough.

People with disability cannot be an after-thought.

National Disability Strategy 2010 – 2020

It is important that Australia has National Disability Strategy 2010 – 2020

It aims to improve:

Lives of people with disabilities

Their families / Carers

Improves focus on better inclusion of people with disabilities

What can we do to celebrate the International Day of People with Disability?

Get involved in attending the event

Promote information on the event in social media

Share information in your workplace

Nominate a person you know

Hold an event

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.