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.
A lot has been written about the impact of the COVID-19 pandemic on people’s mental health and well-being.
It has affected many of us.
This blog introduces a website for people with intellectual disabilities. It could be helpful for people with intellectual disabilities struggling with anxiety, stress and depression.
My Compass Online Website Story (Julie Loblinzk)
My story on why I am using this program. In the last month I had some issues.
My daughter ended up with:
A broken leg with screws in an ankle;
Using a boot with crutches;
Appointment support;
NDIS Support and the list goes on.
My partner has had:
Surgery 3 times;
Issues with health;
Problems with appointment support;
To wear a boot using a wheelchair and the list goes on.
I also increased my work hours at Self Advocacy Sydney from 15 hours to 22 hours per week.
I started having panic attacks and saw my doctor.
Before I saw a specialist, the doctor told me about this website.
I am using this to improve my health and it’s great to use.
What is it?
Online self-help program for people:
With mild to moderate depression;
Anxiety;
Stress;
People with their mental health issues.
What is in the Intellectual Disability section online?
It has 5 sections; each section has 3 parts to it:
Knowing feelings
Breathe and relax
Taming anger
Having more fun
Tracking unhelpful thinking
Positives to using this website
Worksheets can be downloaded;
Easy to use
Get to do activities
The information is accessible
Supports your health and mind
Great resources
Each section has a scale so you know where you are to
It says well done at the end of section
Save your work and go back to it
When you finished a section it tells you what’s next.
Suggestions for improvement:
The program needs to be accessible offline too.
It is an online program and many people with intellectual disabilities are not able to get online.
Let people know about the website.
Not many know about this website.
The name of the section for people with intellectual disability should not include an abbreviation “ID” or “IDTWO”.
Many people with intellectual disabilities do not like to be referred to by acronyms or abbreviations
We are a part of the research team working together with Disability Strategy Implementation team from the NSW Department of Education.
This project aims to create tools that will allow students with high-support needs to talk about their school experience.
Julie presenting at UNSW
Who do we mean by students with high-support needs?
High-support needs is a term often used in Australia, and describes:
Students who have moderate and severe intellectual disability and who need some support in their daily activities
Students with profound intellectual and multiple disabilities who need a lot of support throughout each day and who have more than one disability.
Why is this exciting?
Students with high support are usually last to be thought of and included. They usually do not have much say in their education and school experience. This is also due to their limited communication skills, with some students not using words at all.
This project is important, because people with high-support needs in schools quite often do not have their needs met in the following:
Transitioning from primary school to high school
Transitioning from high school to employment, day program, etc.
Having a say in what they want
Learning confidence skills
Having available resources that suit them individually
Having a person centred plan that they agree with
Feeling included
We are delighted that the NSW Department of Education values students with high-support needs. We are happy to see many current efforts to:
Improve school experience of students with high support needs
Give these student a voice about their school experience
What do we plan to do?
We will be working together with 22 special schools and two mainstream schools with support units from metropolitan, regional, rural and remote areas.
We will be using tools like:
An Easy Read survey
Photovoice and
Body-mapping
We have already used these tools at Chalmers Road School. The students enjoyed the process and told us what they like about their school.
We cannot wait to hear from students with high support needs from the 24 schools that we will be working with.
Our team
Our research colleagues in this adventure are:
Dr Joanne Danker (University of New South Wales)
Professor Leanne Dowse (University of New South Wales)
Dr Brydan Lenne (Disability Strategy Implementation)
Amazing school team from Chalmers Road School – Michelle Davies (school principal), Natalie Anagnostopoulos and Brooklyn Smith (relief principals)
We were frustrated – but, sadly, not surprised – to read that Abigail Talbot, a 15-year-old girl who lives with Down syndrome, had her enrolment at a Launceston Catholic school “cancelled”.
This decision happened because her parents refused to sign off on the learning plan created by the school.
Abigail, the 15-year-old girl whose enrolment was cancelled because her parents did not agree with the learning plan imposed on her.
Reading the article (https://ab.co/3jzcQDz) , we thought about so many things that went wrong.
For example, a student’s learning plan NEEDS to be created in collaboration between the student, their parents and the teacher. It was never meant to be a document created by a school and forced on a student and their parents. It just does not work that way.
There were other things that went wrong in the story. In this blog, we will focus only on one issue out of many – age-appropriateness. Including a picture of the Very Hungry Caterpillar into the learning plan of a 15-year- old student is simply not on. The Australian legislation Disability Standards for Education highlights the importance of reasonable adjustments. To us, the word “reasonable” also means that it should be relevant to the student and their age.
Being age-appropriate is important regardless of age. Adults need to be treated like adults. Yet, adults with intellectual disability get so often treated as children. This is demonstrated in Julie’s very recent experience below:
JULIE’S STORY
“As an adult with Intellectual Disability and Hearing Impairment it’s important in my life that Education and Learning is treated in the same way as people who do not have a disability.
“I want to be treated fairly and equal.
“Everyone with an Intellectual Disability wants to learn with age appropriate activities within education learning including being part of the National Disability Insurance Scheme (NDIS).
“Within COVID-19, between March and June this year, I had support from NDIS under social activities at home from a service provider for three hours on a weekend.
“I had one-on-one support because you could not get together in a group for social activities.
I was given a bag by the staff member and activities included:
Who am I? game for children age 6 year +
Large print colour in book with small colour pencils
Building –a-tool box for a child age three upwards
Play dough for children three years and older
Making pom poms kit
Instructions on how to make a paper airplane
20 game activity sheets on scavenger hunts – kid’s stuff
How to make bake clay in oven
Having a sheet to draw myself
Making an activity jar with adding water and pictures – three year old
Blob tree to colour in how you feel today
Hop Scotch drawing on path – kid’s stuff
Template to create a plane
And the list goes on.
Examples from Julie’s kit
“My point is, I would rather play adult games and have fun with seeing how many games I could win and lose.
“Many people with Intellectual Disability like to have fun, be challenged to learn new things as adults do.
“Services for people with a disability need to review the following:
How things are done so that people can learn in way that suits their needs
Activities and event they offer are age appropriate
All they do need to be based in person centred planning.”
Do you have similar experiences that you would like to share with us? Please let us know.
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.
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.
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.
