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.

Mental health and wellbeing

Mental health and wellbeing during COVID-19

by Iva and Julie

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

Disability education

Students with high-support needs being heard at last

by Iva and Julie

We want to share exciting news with you.

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.

Iva and Julie at the lectern presenting a talk at UNSW
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)
  • Michelle Tso (University of New South Wales)

We will keep you posted about this exciting work!

Disability education, Disability writing

When child’s play is just not appropriate

by Iva and Julie

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.

Sexuality education

Parents worry about sexuality education

by Iva and Julie

Please see the Plain English version below

Parents of children with an intellectual disability are concerned about the quality of sexuality education in schools, according to our recent study.

Recently we conducted a study on sexuality education for high-school students with an intellectual disability in New South Wales. Here is what the nine parents we worked with closely told us.

cover of book on sexuality from SECCA in Western Australia
There are many good resources for sexuality education including these books from SECCA in Western Australia.

Most of the parents said they would like to see their daughter get married and have children in the future.

When reflecting on their child’s sexuality education, they expressed many concerns:

  • Sexuality education does not involve other than heterosexual identities;
  • Poor quality of sexuality education;
  • The lack of training that teachers receive in how to support a student who was abused;
  • Schools being short of counsellors;
  • Not being included in a discussion about the sexuality education of their child;
  • Having to fight the school to talk about same-sex relationships.

The parents were also worried about their children’s vulnerability when it comes to sexual abuse.

Parents’ awareness about sexuality education was also rather minimal:

  • The majority of the parents admitted they have not attended any training about how to teach their children about sexuality and relationships;
  • Only three parents were aware of the resources and training for parents (such as those developed by the Family Planning NSW).

Some recommendations:

Here are some resources that could be useful to know about for parents of students with an intellectual disability:

  • A/Professor Patsie Frawley from Deakin University and her team developed Sexual Lives and Respectful Relationships website: https://www.slrr.com.au

It is also critical that teachers talk to students with an intellectual disability and their parents about what they teach in sexuality education classes.

The NSW Department of Education supports what is called “collaborative curriculum planning process”. This is a team approach involving parents/carers, teachers, other important individuals in the student’s life, and most importantly the student with an intellectual disability themselves.

For more information, please see: https://educationstandards.nsw.edu.au/wps/portal/nesa/11-12/Diversity-in-learning/stage-6-special-education/collaborative-curriculum-planning

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

  • We did a study on sexuality education for high school students with an intellectual disability.
  • The schools we engaged were in New South Wales.
  • Parents of children with an intellectual disability were worried about sexuality education in schools.

This is what the nine parents told us.

  1. Most of the nine parents would like to see their daughter:
  2. Get married, and
  3. Have children in the future.

There were a number of concerns that the parents talked about:

  • Poor quality of sexuality education;
  • Lack of training for teachers about how to support a student who has been abused;
  • Schools being short of counsellors;
  • Parents not having a say in sexuality education of their child;
  • Parents fighting with schools to talk about same-sex relationships;
  • Most parents have not attended any training sessions about how to support their child in sexuality and/ or relationships;
  • Three parents were aware of resources or training information from Family Planning NSW.

See below for some resources:

  • A/Professor Patsie Frawley from Deakin University and her team developed Sexual Lives and Respectful Relationships website: https://www.slrr.com.au

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.