The University of New South Wales’ (UNSW) Professor Iva Strnadová is working to improve the lives of people living with intellectual disabilities and ensure they have a greater say in policies and programs that affect them.
“Historically, people with intellectual disabilities have often been a passive object of research,” Prof. Strnadová says. “But there has been a huge shift over the last two decades for people with intellectual disabilities not only to have a voice in research, but also to be involved in research as co-researchers.”
In Australia, it is estimated that about 7.7 per cent of children aged up to 14 years have some form of disability, and 4.5 per cent with a severe disability, according to data from the 2018 Survey of Disability, Ageing and Carers.
In her capacity of Academic Lead Research at the Disability Innovation Institute at the UNSW Sydney (DIIU), Prof. Strnadová lead the development of the Guidelines for Co-producing Research with People with Disability.
She also recently received a $225,000 grant from the NSW Department of Education to develop and implement accessible methods so that students with high support needs could have a greater say in the trajectory of their education.
The funding will enable Prof. Strnadová and her colleagues Dr Joanne Danker, Adjunct Lecturer Julie Loblinzk and Professor Leanne Dowse to work closely with 22 schools for special purposes [special schools] and two mainstream schools with support units from metropolitan, regional, rural and remote areas across NSW.
Prof. Strnadová says they will be using accessible methods, such as Photovoice and body mapping, “to gain the students’ perspective about what they like and don’t like about their school experience”.
Photovoice uses photo images to capture aspects of the students’ environment, relationships and experiences, so these can be shared with others. Body mapping, an arts-based research tool, focuses on embodied experience. It involves tracing around a person’s body to create a life-sized outline, that can be filled in during a reflective process to produce an image representing multiple aspects of their embodied experience.
Prof. Strnadová says the team will work predominantly with students “who have a very severe disability and limited verbal communication abilities”.
Empowering people with disability to negotiate life transitions
Prof. Strnadová says one of her main research focuses is on diverse transitions experienced by people with disabilities across their life span; for example, from primary to secondary school, from secondary school to post-school life, or from the juvenile justice system to being integrated back into the community, to name a few.
“One of the major obstacles is that educators do not give students with intellectual disabilities, a voice in matters relevant to their own education,” she says.
Prof. Strnadová says the NSW Department of Education grant will help her and her team enable change by giving students with high support needs a voice, and thus increase their self-determination skills.
It is currently very difficult for students to take ownership of their learning because their individual educational plan is often developed without their input, she says.
Instead, their plans – which contain their learning goals and how they’re going to achieve them – are often developed by their teachers, sometimes with input from their parents and other stakeholders, Prof. Strnadová says.
“I think that’s a huge issue that we are still not managing to tackle.”
And the section of the educational plan that addresses the transitional phases should be set to start earlier than just the year before each transition, Prof. Strnadová says.
“People with intellectual disabilities and autism often need more time and environments to practice the different skills and knowledge they acquire.”
Just one example would be teaching them how to take public transport independently – a necessary skill for attaining future employment, Prof. Strnadová says.
Additionally the transition from primary to high school is a challenge for most students with autism who like routine and consistency and can often have quite severe sensory sensitivities, she says.
“The sound of a school bell can often feel like a sharp piercing feeling in their ears and a slight flicker in fluorescent lights can be an excruciating experience,” she says. “So, we need to look at the needs of the students and how we can better prepare them for the next phases in their lives.”
Sexuality education and parenting
Education around relationships, reproduction, sexual intercourse and parenting is another area that is currently under-serviced for people living with a disability, Prof. Strnadová says.
“Many of the mothers with intellectual disabilities who I’ve spoken to in my studies had very little to no sexuality education and some didn’t even know they could get pregnant,” she says. “They didn’t even know what to do after becoming pregnant, so that put them at a huge disadvantage.”
Prof. Strnadová says her current and future research also looks at ways to improve sexuality education for students with intellectual disabilities and autism.
Children being removed from their parents’ care, due to ill-conceived perceptions about people with intellectual disabilities somehow harming their offspring, is another issue Prof. Strnadová hopes to change.
Once it has been brought to the attention of a social worker that a person with intellectual disabilities is about to give birth, they often try to remove the child rather than provide support for the parents, she says.
“We know from research that parents with intellectual disabilities can learn well how to take care of their children,” Prof. Strnadová says. “They might need to be shown some parenting skills in their own home environment, but it doesn’t mean that they cannot be good parents.”
Prof. Strnadová says UNSW’s School of Education has been piloting a four-week program with people living with intellectual disabilities called ‘Rights and Relationship’, which was developed by the Intellectual Disability Rights Service (IDRS).
They’ve had great success with adults in this program, and their next step is to trial it in Matraville Sports High School to help improve sexuality education for students with intellectual disabilities, she says.
“We also hope to upskill the future co-educators who have intellectual disabilities so they can co-teach the ‘Rights and Relationships’ program with the high school teachers,” she says. This is another way people with disabilities can contribute to advocacy and research that affects their education, work and lifestyle.
Advocating for access to the internet
While access to the internet is something most Australians take for granted, this is often a privilege that people with intellectual disabilities live without. Prof. Strnadová says people with intellectual disabilities often live in poverty and can’t afford the internet or compatible devices.
“One of the things we need is for the internet to be covered by the NDIS,” she says. “The COVID situation has shown us all that we do need online access and it shouldn’t be a question of privilege.”
“It should be a right, because that’s how we’ve been receiving educational information about this health crisis. Since the start of the pandemic, many of the self-advocacy organisations that usually support people with intellectual disabilities in face-to-face mode have moved online.”
Prof. Strnadová is undertaking a study, commissioned by Self Advocacy Sydney, that looks at how peer support and peer mentoring can be developed on online platforms.
She has also worked on a project led by her colleague at UNSW Dr Sue O’Neill, in collaboration with Prof. Terry Cumming (UNSW), the NSW Department of Education and NSW Department of Juvenile Justice, to develop a framework for children who are transitioning out of juvenile justice facilities.
The framework will help the government to “improve the transition planning for this population and hopefully improve their outcomes”, she says.
Prof. Strnadová and Ms Loblinzk have also established Disability and Me – a resource-rich blog written by people with a disability for people with a disability, their loved ones, carers, teachers, and caring professionals.
When asked what she considers her biggest achievement, the special education and disability studies expert says it’s the privilege of being able to work with, co-design and co-produce research with people with intellectual disabilities.
“To help and support them in building capacity to say what topics interest them, and what the research should focus on and why,” she says.
“But to also have them guide us in how we actually make sure that the research then has an impact on their lives rather than just on journal articles.”