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 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.