Supporting self-determination of people with intellectual disabilities in education and health
Inclusive research with people with intellectual disabilities and on the autism spectrum supports self-determination and improves education and health outcomes.
A new suite of accessible methodologies will help NSW schools better understand how students with intellectual disabilities and on the autism spectrum feel about their education.
The suite, called My Say My Way, uses body mapping, photovoice and accessible surveys to help students convey their perspectives on their school experience.
My Say My Way, created in partnership with UNSW Sydney, the NSW Department of Education and 24 NSW schools, is being considered for a state-wide rollout following an effective trial with more than 130 students with moderate and high support needs.
“We are talking here about students who have, for example, severe or profound intellectual disabilities, who have also physical disabilities, hearing [and] visual impairments, and so on,” says project lead Professor Iva Strnadová from UNSW’s School of Education.
“[In the trial, the students] were able to communicate with us what they like and don’t like about their schools for the first time ever. So, this has just been such a fantastic process,” the expert in special education and disability studies says.
“This is a world-first initiative … to, on a state-level, ensure that students with this level of support needs have a voice about their education.”
My Say My Way offers an alternative to Tell Them From Me, a standard survey schools use to capture the responses of students, parents and teachers to a range of aspects of school life and student wellbeing. Tell Them From Me is long and in-depth, making it inaccessible for students with higher support needs, Prof. Strnadová says.
Photovoice uses photo images to convey aspects of the student’s environment, relationships and experiences, so they can be shared with others; in body mapping, an outline of the student’s body is filled in during a reflective process to produce an image representing multiple aspects of their embodied experience.
My Say My Way has also been embedded into a NESA-accredited teachers training workshop at UNSW.
Dr Brydan Lenne, Program Manager, Ambassador Schools (Transformation) from the NSW Department of Education, was co-ordinating the trial for the Disability Strategy team.
“Schools for specific purposes and support units often give feedback that while the department’s existing ways to hear student voice work well for some students with disability, they aren’t accessible for all,” she says.
“It’s been fantastic to be able to co-design and trial these methods while receiving crucial feedback from our amazing teachers, who understand that for students with some disabilities, communication isn’t always straightforward or linear.”
More information about the My Say My Way trial can be found here.
My Say My Way is part of a broader movement towards supporting self-determination and self-advocacy of people with intellectual disabilities through inclusive research, says Prof. Strnadová. Collaborating with people with intellectual disabilities – who are partners in this process – ensures research is fit for purpose, she says.
The initial pilot for My Say My Way was co-designed with long-term research partners Chalmers Road School, a school for specific purposes. Additionally, the research team included Ms Julie Loblinzk, a researcher with an intellectual disability and an Adjunct Lecturer at UNSW Sydney.
“This was critical in informing the development of the surveys as well as when we were working through how to analyse the data,” Prof. Strnadová says. “Julie has been supporting other people with intellectual disabilities for 24 years, mentoring others [in self-advocacy] ... That goes beyond lived experience.”
Ms Loblinzk is passionate about person-centred planning. “For many years, most people with intellectual disabilities’ life decisions were made for them, and people didn’t have a say,” she says.
“[Person-centred planning] is about supporting them to be able to look at choices that they want to be able to have in their lives… to look at changes for people’s lives to be better.”
Adjunct Lecturer Julie Loblinzk and Prof. Iva Strnadová analysing data from the My Say My Way co-designed research project. Image supplied.
Health care and sex education are also areas where people with intellectual disabilities and on the autism spectrum come into conflict with unconscious and overt bias.
Prof. Strnadová and Ms Loblinzk are collaborating with Dr. Elizabeth Emma Palmer from UNSW Faculty of Medicine & Health on a suite of accessible genomic counselling resources co-designed with and for people with intellectual disabilities to improve their health outcomes.
Australia’s current genomic health care model that informs individuals about the causes of their conditions is not accessible to people with intellectual disabilities, Prof. Strnadová says. Additionally, many people with intellectual disabilities are still not consulted on decisions about their health care, she says.
“Having accessible resources will help people with intellectual disabilities ask the right questions and give them the right information to make decisions about their health,” she says.
The first phase of the GeneEQUAL research program, conducted in partnership between UNSW Sydney, NSW Health and Sydney Children’s Hospitals Network, wanted to find out directly from people with intellectual disabilities about their knowledge, perspectives and experiences, and education needs and preferences when accessing genomic services within NSW Health. Some of the gaps in genomic health care provision identified in this first phase will be addressed in the second phase, funded by the NSW Health, in which a package of point-of-care genomics resources will be co-produced, in collaboration with people with intellectual disabilities.
"More than 450,000 Australians, or 1.8% of the Australian population, have intellectual disabilities. Yet there are large health inequities as identified in the recent National Roadmap for improving the health of people with intellectual disability,” says Dr Elizabeth Emma Palmer, a clinical geneticist at Sydney Children’s Hospitals Network and lecturer at UNSW Medicine & Health.
“For example, people with intellectual disabilities have more than twice the rate of avoidable deaths, twice the rate of emergency department and hospital admissions, significantly lower rates of preventative healthcare and substantially higher rates of physical and mental health conditions.
“Genomics has revolutionised our understanding of intellectual disabilities, with underlying genetic conditions now increasingly being able to be identified, providing opportunities for preventative healthcare and tailored management and support.
“Inclusive, respectful and trauma-informed genetic counselling is needed to ensure that people with intellectual disability can understand their genomic healthcare choices and benefit from the opportunities that genomics can provide people.”
Dr Palmer is leading the GeneEQUAL project in collaboration with Prof. Strnadová, Ms Loblinzk, Professor Jackie Leach Scully, bioethicist and Director of the UNSW Disability Innovation Institute, and Jackie Boyle, genetic counsellor from the NSW Genetics of Disability Service.
The research program, funded by NSW Health, will develop a world-leading inclusive genomic model of care for people with intellectual disabilities. More information about the GeneEQUAL research program can be found here (www.GeneEQUAL.com).
Adjunct Lecturer Julie Loblinzk and Prof. Iva Strnadová collaborating from home during the pandemic. Image: Supplied.
Prof. Iva Strnadová and Adjunct Lecturer Julie Loblinzk meeting to conduct research during the pandemic. Image: Supplied.
A lack of accessible resources and the use of non-inclusive language are also barriers to sex education. Additionally, the good intentions of family and friends to shield people with intellectual disabilities and on the autism spectrum can be a problem, Ms Loblinzk says.
When it comes to sex and personal relationships, this protectivism can have dire consequences, the researchers say. The 2021 Disability Royal Commission heard 90% of women with intellectual disabilities have experienced sexual abuse, and 68% of women with intellectual disabilities will be subjected to sexual abuse before they reach 18 years of age.
The Intellectual Disability Rights Service (IDRS) – a frontline service in NSW assisting adults with intellectual disabilities engaged with the justice system – designed an early intervention sexuality and relationships education program, called the Rights and Relationships program.
The Rights and Relationships program, a partnership with IDRS and UNSW researchers led by Prof. Strnadová, has been adapted for use in schools. It teaches high school students with intellectual disabilities and on the autism spectrum practical strategies in recognising and responding to inappropriate behaviours and harmful situations; understanding consent and building respectful relationships; building their decision-making abilities and developing healthy sexual identities.
The program will be trialled at selected NSW schools and adult sites this year following its successful pilot at Matraville Sports High School.
“The beautiful thing about this project is that it is inclusive on so many levels. It was co-developed by people with intellectual disabilities. The program is co-taught by educators with and without intellectual disabilities,” Prof. Strnadová says. “And our research evaluation team includes a researcher with intellectual disability.”
The researchers are committed to pursuing self-determination and positive change for people with intellectual disabilities through inclusive research, education and respect.
“It's very much around rights, responsibilities and consequences because rights get taught, but not much about responsibilities and consequences,” Ms Loblinzk says. “[People with intellectual disabilities need to] have a chance to learn … [including] a chance to be able to learn from their mistakes.”
For more information about Ms Julie Loblinzk and Professor Iva Strnadová’s work, please visit their blog Disability and Me.
Lead image: Prof. Iva Strnadová (left) and Adjunct Lecturer Julie Loblinzk are championing inclusive research for people with intellectual disabilities. Image: supplied.
This article was originally published in 2022.