We would like to invite you to an online launch of the book, “Belonging and People with Profound Intellectual and Multiple Disabilities: Pushing the Boundaries of Inclusion”.
the cover of the new book
We are very excited about this book for several reasons:
This book resonates with what we stand for. We want all people with disability to KNOW that they belong in this world, in the society, in their communities…
We have often talked about how people with intellectual disabilities continue to be excluded. This is especially true for people with profound intellectual and multiple disabilities. Yet, they have right to be included, and to belong.
We always celebrate each other’s accomplishments .
The chapters in the book are divided into three sections: belonging in education, belonging in research and belonging in communities.
Johanna with some of her family
This book is dedicated to the memory of Johanna de Haas (1988 – 2019), an inspirational woman with profound intellectual and multiple disabilities. Johanna is an example of how people with profound intellectual and multiple disabilities can be included and empowered to contribute to people close to them, to research, and to the community.
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
Ann-Marie Smith, Willow Dunn, and hundreds of thousands of people with disability… Things need to change!
On May 30 Australians are being asked to hold a one-minute vigil for Ann-Marie Smith, a tragic story of abuse of a woman with a disability.
Ann-Marie Smith was a 54-year-old Adelaide woman with cerebral palsy, who lived on her own. She relied on her carer to support all her needs. She died this April with the following issues: severe septic shock, organ failure, sores, malnutrition. She had spent more than a year in a cane chair, 24 hours per day. Yet she was funded for six hours a day of disability care and support a day. Thankfully the carer was sacked, is being investigated by police, and should not be allowed to support people with disability again.
Ann-Marie Smith will always be remembered
But this is not a story of one neglectful carer. This is a story of a major issue with our disability care system across Australia. On May 28 news came of a little girl with Down’s Syndrome, called Willow Dunn, allegedly murdered by her own father. This prompted an online candlelight vigil. Abuse keeps on happening. People with disability are simply not being supported in our society. Indeed, this story highlights how little communities value people with disability. One minute is all it would have taken for neighbours to check in on Ann-Marie. Or Willow for that matter. Thus the call for one-minute’s silence.
The COVID-19 context demonstrates that this is not a rare case. Consider the shocking percentage of deaths in care homes worldwide, and the fact that people with intellectual disability were refused testing for COVID-19 in some countries, though they are among the most vulnerable populations. What does is say about us as a society?
Abuse of people with disability should not be ignored and reports should be sent to authorities. Review of practices should be strongly implemented to make sure this behaviour is stopped.
We are heartened by some of the responses on our personal Facebook pages to news of these shocking cases. From Alex Strike: “This is wrong! I don’t understand why people act this way towards people with disability. How dare they get away with it!” And from Angelo Hatz: “It’s absolutely disgraceful that people with physical and intellectual disabilities are treated like this in this day and age. More needs to be done now to ensure that this type of abuse and neglect does not happen… people with physical and intellectual disabilities need to be treated like human beings and valued members of our community.”
And this is why the Disability Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability is so ESSENTIAL. We need to hear the voices of those who have been silenced for centuries. We need to stop the abuse. We need to put in preventive measures, so that abuse and neglect of people with disability does not happen again.
That is also why it is so important to REMEMBER. To remember that lives of some people, like those with intellectual and other disability continue to be treated as if they are worth less than others. The blog by our dear friend Jan Walmsley is a great reminder of that: https://janniewannie.wordpress.com/2020/05/02/remembering/
On May 30 Australians are being asked to hold a one-minute vigil for Ann-Marie Smith, a tragic story of abuse of a woman with a disability.
Ann-Marie Smith:
54-year-old
lived on her own
had a carer to support her in all her needs for 6 hours per day
had a disability (cerebral palsy)
died in April 2020.
Ann died because:
severe infection,
organ failure,
sores,
hunger,
spent more than a year in a cane chair, 24 hours per day.
Thankfully her carer was sacked. This is being looked into by police.
Her carer should not be allowed to support people with disability again.
Also, in May we learnt about a little girl with Down’s Syndrome, Willow Dunn. She was allegedly killed by her own father.
This story is not about one carer who was careless. Or about one parent who killed their child.
It is about:
major issues people with disability have with care system across Australia.
Abuse keeps on happening.
People with disability are not being supported in our society.
Communities do not value people with disability.
It does not take long to check on your neighbours and how they are.
The COVID-19 situation shows this is not a rare case.
Think about the deaths in care homes worldwide.
People with intellectual disability were refused testing for COVID-19 in some countries. But there are among the most at risk people.
What does is say about our world?
Abuse of people with disability should not be overlooked.
Reports should be sent to authorities.
Review of practices should happen, so this abuse does not happen again.
This is what some people said about this on our Facebook pages:
Alex Strike: “This is wrong! I don’t understand why people act this way towards people with disability. How dare they get away with it!”
Angelo Hatz: “It’s absolutely disgraceful that people with physical and intellectual disabilities are treated like this in this day and age. More needs to be done now to ensure that this type of abuse and neglect does not happen… people with physical and intellectual disabilities need to be treated like human beings and valued members of our community.”
Iva Strnadová and Julie Loblinkz are research partners and friends. They host the blog Disability and Me. Both are strong advocates for people with intellectual disability.
Teachers can learn a lot from students with intellectual disability when it comes to educating them about sexuality, according to our recent study in NSW schools.As part of our research into sexuality education in NSW high schools, we spoke to parents, teachers and students. (Sex Education Needs to be Explicit)
The findings from students were most instructive. Students told us that through school they had learned about such topics as relationships, using contraception, having children and taking care of them, sexually transmitted illnesses, puberty, and women’s and men’s bodies.
Juile, left, and Iva working on their research
However, not all students in our study learnt about different sexuality and gender identities, leading to some confusion.
One student told us: “I would have liked to know about the different types of sexuality, so I didn’t think I was super-weird. … You had to find out through someone else, like, ‘Oh, if you’re feeling like this, maybe you have this.’”
“They’re like, ‘Oh, my God, I feel so much better, knowing I have a name to this! It was like, yes, names help! It also makes you feel like, well, hey, if there’s a name for this, I’m not the only one who’s feeling it! ’ ”
The students also told us that the resources their teachers mostly used in sexuality education classes included videos, books and worksheets. Only one student mentioned the use of pictures. The students had many recommendations for teachers, which included:
Using large font size
Simplifying language used in classes, as the use of complicated terms by teachers impacted on their ability to understand what they were being taught
Explaining vocabulary used in each lesson
Using a question box, so that students can pose their questions about sexuality anonymously
Teaching students how to do Google searches
Allowing students to use time out cards and/ or bean bags when they feel stressed out.
In addition, less than a third of the students attended their Individual Education Plan (IEP) meeting, and none of them ever received a copy of their own IEP.
This worries us tremendously, as this means that students with intellectual disability might not have a say in planning for their learning and do not even know what their learning plan is! How are they meant to learn self-determination and independence? This really is against the “Nothing about us without us” disability movement motto.
All of the suggestions made by students are in line with evidence-based practices, that is practices evaluated by research as efficient and beneficial for students
Iva and Julie
All of the suggestions made by students are in line with evidence-based practices, that is practices evaluated by research as efficient and beneficial for students. Such evidence-based practices include direct instruction, task analysis, video modelling, active participation in IEP meetings, and many others.
These are some great resources for teachers to learn about evidence-based practices that can be used across different subject areas, not just sexuality education:
There is also this amazing resources developed by our colleague, Professor Michael Wehmeyer, which helps teachers to explain to students with disabilities the purpose of IEPs, and how to take part in these in a meaningful and self-determined way. The program is called Whose Future Is It Anyway?, and it is accessible here, free of charge: http://www.ou.edu/education/centers-and-partnerships/zarrow/transition-education-materials/whos-future-is-it-anyway
It is important that students understand what is being taught, get information in a way they understand, and be supported by teachers and family.
PLAIN ENGLISH VERSION
We talked to the following people in our study:
Students with intellectual disability
Their parents
Their teachers.
Students with intellectual disability from New South Wales high schools said the following information in our study:
Teachers can learn a lot when it comes to teaching about sexuality.
Sexuality education needs to be clearly discussed.
Students also said that they learnt about these topics in their sexuality education classes:
Relationships
Contraception
Having children
Taking care of children
Sexual Transmitted diseases (STI’s)
Puberty and
Women’s and men’s bodies
Teachers used the following resources to teach them:
Video’s
Books
Worksheets and
One student talked about pictures
Not all students learnt about:
Different sexuality or
Genders (the fact of being who a person is).
This was confusing to some people. For example, one student said:
“I would like to have known the different types of sexuality, so I did not think about I was super-weird.”
“I feel so much better knowing I have a name to this.”
“It also makes you feel like … I am not the only one who is feeling it.”
Students had many ideas for teachers to think about:
Use large font (size 14 or above)
Use simple language so students understand
Explain language in lessons
Use a question box for students to write questions down so it’s private on who said what
Support students to learn to use Google searches
Use tine out cards, bean bags when stressed
Provide information in plain English
Only 3 students attended their Individual Education Plan meeting (IEP).
No students received a copy of their IEP!
This worries us greatly because:
Students might not have a say in planning for their learning.
How they will learn self-determination (being independent)?
It’s going against our saying in disability movement:
“Nothing about us without us”.
All of the suggestions from students are in line with information about practices that work for students.
These practices are called “evidence-based practices”.
Here are some examples:
Direct Instructions
Task Evaluation
Video
Taking part in IEP Meetings
There are great resources for teachers about these practices – see list below:
Iva Strnadová and Julie Loblinkz are research partners and friends. They host the blog Disability and Me. Both are strong advocates for people with intellectual disability.
What are the challenges for teachers educating students with intellectual disability about sexuality?
Recently we conducted a study on sexuality education for students with intellectual disability in New South Wales mainstream high schools. We talked to students with intellectual disability, their parents and their teachers. We found some positive outcomes, but also many problems.
The very best news is that sexuality education is available in the first place. When I (Julie) went to school, students with intellectual disability did not receive sexuality education at all, and I didn’t think it would be ever possible.
But an alarming finding was the extent to which teachers found some students had been abused or subjected to domestic violence. This is a huge concern and consistent with what we know from literature – that people with intellectual disability (and especially girls and women) experience more domestic violenceand other forms of gender-based and sexual violence, such as rape, than other people. In the context of COVID-19, people with intellectual disability are even more vulnerable.
Family Planning NSW has some good Easy Read resources
Teachers also highlighted the lack of accessible (Easy Read or plain English) resources that they could use for sexuality education. Some of those that did know of accessible resources say they don’t feel comfortable with the explicit pictures. This is a worry because students with intellectual disability need explicit instruction. If teachers are not comfortable with using these materials, how will the students learn?
It is important that teachers use accessible and straightforward resources and overcome their discomfort about tackling the subject. Here are some ideas:
A/Professor Patsie Frawley from Deakin University and her team developed a Sexual Lives and Respectful Relationships website. https://www.slrr.com.au
We will share with you what the students and their parents told us in the forthcoming blogs.
Iva Strnadová and Julie Loblinkz are research partners and friends. They host the blog Disability and Me. Both are strong advocates for people with intellectual disability.
PLAIN ENGLISH VERSION
Iva and I did a study about sexuality education.
We went to mainstream high school students in New South Wales. We talked to:
Students with intellectual disability
Their parents
Teachers
There were positives and problems.
This plain information is about teachers.
Positive
Sexuality is being taught to students with intellectual disability.
Problems
Students being abused
Students going through domestic violence
Lack of Easy Read information resources
People with intellectual disability being
Abused or
Going through domestic violence or
Being raped
is a big problem.
In one of our stories we talked about COVID-19 and how people with intellectual disability are at risk.
Teachers should use accessible information resources. See below:
What are the challenges for teachers in educating students with intellectual disability about sexuality?
Recently we conducted a study on sexuality education for students with intellectual disability in New South Wales mainstream high schools. We talked to students with intellectual disability, their parents and their teachers. We found some positive outcomes, but also many problems.
The very best news is that sexuality education is available in the first place. When I (Julie) went to school, students with intellectual disability did not receive sexuality education at all, and I didn’t think it would be ever possible.
Family Planning NSW has some Easy Read resources
But an alarming finding was the extent to which teachers found students had been abused or subjected to domestic violence. This is a huge concern and consistent with what we know from literature – that people with intellectual disability (and especially girls and women) experience more domestic violenceand other forms of gender-based and sexual violence, such as rape, than other people. In the context of COVID-19, people with intellectual disability are even more vulnerable.
Teachers also highlighted the lack of accessible (Easy Read or plain English) resources that they could use for sexuality education. Those that did know of some accessible resources say they don’t feel comfortable with the explicit pictures. This is a worry because students with intellectual disability need explicit instruction. If teachers are not comfortable with using these materials, how will the students learn?
It is important that teachers use accessible and straightforward resources and overcome their discomfort about tackling the subject. Here are some ideas:
We will share with you what the students and their parents told us in the forthcoming blogs.
Iva Strnadová and Julie Loblinkz are research partners and friends. They host the blog Disability and Me. Both are strong advocates for people with intellectual disability.
PLAIN LANGUAGE VERSION
Iva and I did a study about sexuality education.
We went to mainstream high school students in New South Wales. We talked to:
Students with intellectual disability
Their parents
Teachers
There were positives and problems.
This plain information is about teachers.
POSITIVE
PROBLEM
Sexuality being taught to students with intellectual disability
In the past it was not taught in schools
Students being abused
Students going through domestic violence
Lack of Easy Read information resources
People with intellectual disability being
Abused or
Going through domestic violence or
Being raped
is a big problem.
In one of our stories we talked about COVID-19 and how people with intellectual disability are at risk.
Teachers should use accessible information resources. See below:
Iva Strnadová and Julie Loblinkz are research partners and friends. They host the blog Disability and Me. Both are strong advocates for people with intellectual disability.
Many people are lonely and isolated because of COVID-19 but people with intellectual disability have fewer options for social connection, partly because accessing and using the internet remains a large obstacle.
While many people socialise via social media and online platforms many people with intellectual disability cannot do so. One reason is poverty. People with this disability continue to experience high levels of poverty, which affects their ability to pay for the internet or the technology to use it.
Many people with intellectual disability also need one-to-one help to learn to work on devices, such as laptops, smart phones, to navigate diverse social media and online platforms. This is particularly difficult in the current COVID-19 context.
Solutions lie with both individuals and governments. Are there people with IT skills who can help in such times, for example? IT workers with time to spare partner could partner with organisations such as Intellectual Disability Rights Service (IDRS) or Self Advocacy Sydney, organisations which are active in social spaces such as Facebook, and continue to support people with intellectual disability? They can match
Governments also have a role to play in assisting those in financially difficulty to access the internet and related technology. The internet could be covered by the NDIS, for example.
But in the meantime perhaps the solution lies with those who do have both access and knowledge.
We are seeing many examples of human kindness and ingenuity during these times. Can we find a solution that could work not just for people with intellectual disability but for anyone who struggles with technology and is experiencing one of the worst side-effects of Covid-19? Loneliness.
PLAIN LANGUAGE VERSION
Many people are lonely because of COVID-19.
People with intellectual disability have less choices for social connection because of access in using the internet remains as a large problem.
The IT business would be helpful in having a role to play here.
While many people mix with other people via social media and online places, people with intellectual disability cannot do. This can be because they:
experience high levels of poverty;
cannot pay for using technology, e.g., internet;
need one on one support to learn and use laptops and smart phones.
Answers lie with both individuals and Governments.
Are there people with IT skills who can help to support people with intellectual disability using Facebook / internet in such times? They could support services like:
Self Advocacy Sydney Inc (SAS)
Intellectual Disability Rights Service (IDRS).
Services and Governments have a role to play in supporting access to internet.
But for now maybe answers lies with those who do have access and knowledge.
Can we find an answer that could work for anyone who has issues with technology?
Iva Strnadová and Julie Loblinkz are research partners and friends. They host the blog Disability and Me. Both are strong advocates for people with intellectual disability.
We’re thrilled with the response to the launch of our blog and thank everyone for their feedback.
Some of you have asked if it’s possible to have an Easy Read or plain language version of the stories we are posting. Yes it is, and from this week you will notice that all our posts will have a plain language version.
From this week you can also opt in to receive notification of new posts and initiatives from Disability and Me.
With your support and regular feedback, we hope we can grow this blog to be a gold-standard communications tool for people in the disability community.
On the subject of plain language / Easy Read, we’d like to remind everyone that it’s vital to stay up to date with the latest Government information on Covid-19.
For people with intellectual disability, that means locating trusted information in an accessible format.
Luckily, there are some reliable resources in the standard Easy Read format.
It’s just a matter of sharing them.
If you are a person with intellectual disability, a family member, social worker, carer or friend, please pass on these valuable resources.
And don’t forget to stay in touch. The social isolation of Covid-19 can be even harder for people with intellectual disability who usually rely on one-on-one support.
For a range of information on the virus, and staying physically and mentally healthy and visiting the doctor, please see resources developed by New South Wales Council of Intellectual Disability (NSW CID): https://cid.org.au/resources/
Iva and I are happy with the responses to the launch of our Blog.
We thank everyone for their feedback.
It is easy to do a plain English version of what we are posting. All our posts will have one.
From this week you can get a notification of new posts from Disability and Me.
With your support and feedback, we hope this blog will grow to be a gold standard tool for people in the disability community.
It is important to stay up to date with information from the Government on COVID-19. This means getting information you trust and having information in a way you understand.
There is some reliable information in easy read format, and it is important to share this with others you know.
Stay in touch with others. For people with intellectual disability COVID-19 is harder for them. They usually have one on one support.
Iva Strnadová and Julie Loblinkz are research partners and friends. They host the blog Disability and Me. Both are strong advocates for people with intellectual disability.
It’s timely that the Stella prize for literature should go to a writer highlighting domestic violence. This is a pressing issue for many women, but especially those with an intellectual disability.
It’s a sad fact that people with intellectual disability lack quality sexuality and relationship education. Girls and women with this disability are often left unprepared for relationships, unsure how to recognise the difference between healthy and unhealthy relationships, or how to recognise what is and what is not abuse.
Furthermore, they are also often not protected by police, as their statements are not always taken seriously.
The social isolation of Covid-19 only exacerbates the situation.
But there are places where girls and women can get support. If you are a family member of a women with intellectual disability or know of someone who is in this situation, please share these important resources:
They can call 1800RESPECT for support, counselling and referral (phone is 1800 737 732).
1800RESPECT and the Women with Disability Australia co-designed an app called SUNNY for women who experience abuse and violence. It is free to download and use on a smart phone for free:
Download Sunny from the App Store for iOS
Download Sunny from Google Play for Android phones
Knowmore also provides free legal advice to survivors of abuse – their phone is 1800 605 762
NSW Rape Crisis provides 24 hour support line for people who have experienced sexual assault and can be contacted on phone number 1800 424 017
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
About This Site
A resource-rich blog written by people with disability for people with disability, their loved ones, carers, teachers, and any caring professional.
