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

Uncategorized

Australian Charter of Health Care Rights

by Iva and Julie

Do you know:

  • your health care rights rights in Australia?
  • That we have Australian Charter of Health Care Rights?

A charter of rights is

  • a list of all the human rights
    • the country thinks that are important
    • for everyone

What does the Australian Charter of Rights do?

  • It says the rights for both
    • patients
    • carers of patients
    • it explains what health care needs to be like

It covers

  • all people in Australia
  • all places in Australia
  • public hospitals
  • day procedure services
  • general practices
  • other community health services

So what are your health care rights?

Access – I have a right to:

  • health care and treatments
  • that meet my need

Safety – I have a right to:

  • get safe and high quality health care
  • in a setting that makes me feel safe

Respect – I have a right to:

  • Be treated with respect
  • have my culture, identity, beliefs and choices recognised.

Partnership – I have a right to:

  • ask questions
  • be included in honest communication
  • make decisions with my health care staff
  • include the people I want in planning and decisions

Information – I have a right to:

  • clear information about my condition
  • information about services, waiting times and costs

I have a right to be given help to:

  • help me to understand my health
  • be told if something has gone wrong

Privacy – I have a right to:

  • have my privacy respected
  • have information kept safe and confidential

You can find the Easy Read Charter on this link:

https://www.safetyandquality.gov.au/sites/default/files/2019-08/charter-of-healthcare-rights-easy-english-web-accessible-version-july-2019.pdf

We are working on a GeneEQUAL project

  • you can read about it in our other blogs

In GeneEQUAL we learn about

  • experiences of people with intellectual disabilities
  • with health care

Here is what we heard

  • about health care rights in Australia

Health care workers sometimes

  • do not speak directly to a person with an intellectual disability
  • do not spend enough time to get to know the patient
  • rush appointments
  • use negative language about disability
  • do not know that people have often had trauma

What needs to happen?

Health care workers need to

  • use positive words about disability
  • for example ‘condition’ is better than ‘disorder’
  • explain things in simple words and pictures
  • use Easy Read when explaining things

  • talk slowly
  • know different ways to communicate
  • have more ongoing professional training – to support people with intellectual disabilities the best way

This will help to make the Charter reality!

You can learn about the Charter here:

https://www.safetyandquality.gov.au/consumers/working-your-healthcare-provider/australian-charter-healthcare-rights

Write to us if you want to know more about our work

julie@sasinc.com.au

i.strnadova@unsw.edu.au

Uncategorized

Understanding your thoughts on genetic testing and counselling

by Iva and Julie

Hello everyone

We hope you have all been well during these difficult COVID-19 times.

We would like to tell you about our new project. It’s called GeneEQUAL.

We need to listen to people to intellectual disability so that we can make their health care better.

Doctors need to know how to make people with genetic conditions feel safe and respected

This project will show us how we can make genetic health care better.

What do we want to find out about this project?

We want to learn about what people with intellectual disabilities think about:

Genetic counselling

Genetic counselling means talking about why people have a health or learning difficulty.

Gene testing

Gene testing means a blood or spit test to help find out why people have a health or learning difficulty.

Who do we want to talk to?

We want to talk to anyone who

  • lives in NSW
  • has an intellectual disability
  • has ever had a genetics test or seen a genetics doctor or counsellor
  • is aged 18 years or older

What does taking part involve?

Taking part in the study will involve meeting Julie and me to talk. This will happen online (Zoom, Skype, Facetime, Teams) or via phone.

We will ask you about:

  • What is was like to have genetic counselling or testing
  • How you think genetic testing or counselling should be done

Who is doing this research?

We are conducting this research with Dr Emma Palmer

And Professor Jackie Leach Scully from the University of New South Wales.

Mrs Jackie Boyle from New South Wales Health.

And Suzanne Nevin from UNSW and Sydney Children’s Hospital.

What can you do to help us?

Please let other people know aobut this study

If you want to know more we would love to chat with you.

You can call Iva on 0426 959 172

Or email us at

i.strnadova@unsw.edu.au

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

Uncategorized

Hello world!

by Iva and Julie

Why write this blog? Several reasons really. We are researchers in the field of disability and have disability ourselves. But most importantly, there are just not enough resources, not enough conversations, not enough discussed about the lives of people with disability, their capacity for healthy relationships, sex lives, parenting, productive jobs. All the aspects of life that people living without disability take for granted. It’s often assumed that people living with an intellectual disability cannot, for example, make good parents. Julie is living proof that this is simply not true. Sometimes additional support may be needed and that’s what we will discuss on these pages. We look forward to you joining us here often.

Julie presenting at UNSW