What is the value of disability advocacy?
What would we lose if disability advocacy organisations like Council for Intellectual Disability (CID) disappeared? Why are disability advocacy organisations so important? Justine O’Neill, our CEO, reflects on a new academic report that looks at these questions.
I was lucky to get the chance to see our Member, Anthony Mulholland, giving testimony at the NSW Parliamentary Inquiry into the NDIS last month.
Anthony presented recommendations from our Advocacy Group, all of whom have an intellectual disability, about how to improve the NDIS. He also answered questions ‘off the cuff’ from the Inquiry’s panel members.
I felt privileged to see Anthony in action. Through his confidence and depth of knowledge he really connected with the Inquiry panel members. His stories provided a window into the day-to-day experiences and frustrations of a person living with disability dealing with the NDIS.
Anthony’s lived experience clearly made an impression with the people on the Inquiry panel and his testimony will no doubt influence their recommendations about how to improve the NDIS.
Anthony was joined by Jim Simpson, our Senior Advocate, with support from David Briggs, our Advocacy and Policy Officer.
What a formidable team they were!
Advocacy led by people with disability
As I watched Anthony and our team in action, it struck me that this is what makes CID’s advocacy work so strong: a person with disability speaking directly to those in power, complemented and supported by our expert staff members like Jim and David.
Our advocacy work is a powerful mix of real life experience and technical expertise.
But for us, it is the real life experience of people with disability that should always lead our advocacy.
We strive to let people with disability speak for themselves, rather than try to speak on their behalf. We believe this is not only the most ethical approach to disability advocacy, but also the most powerful.
So I was delighted to read a recent academic report that validated this ‘person-centred’ approach to advocacy.
“[CID] models inclusion of people with intellectual disability in everything it does.”
Bigby and Henderson, 2018
Valuing disability advocacy
Academics from La Trobe University in Melbourne have released the first report from a study on the rationale and value of disability advocacy.
The report, written by Professor Christine Bigby and Dr David Henderson, is called ‘Raising the voices of people with intellectual disabilities and changing systems’.
Although the report looks at the work of CID, the findings relate to all organisations that help people with disability speak out for themselves and advocate for their rights.
Here are just some of the findings that stood out to me:
- [CID’s] edge results from being deeply grounded in the experience of people with intellectual disabilities.
- Two outstanding features of CID, in addition to its inclusivity, are its solution-focused approach and its commitment to working collaboratively.
- CID is particularly adept at linking what is happening to individuals on the ground to broader policy directions.
- CID’s strategic and sustained approach to key issues has led to significant and lasting change.
You don’t need to look far to find out what this advocacy work looks like and how well it works. Whether it’s Steven and Jack writing about our Advocacy group’s submission to the NSW Parliamentary inquiry into the NDIS, Alanna Julian presenting to a Federal Government hearing on how the NDIS can be improved, Michael Sullivan delivering an impassioned speech on how to improve the mental health of people with intellectual disability, Robert Strike presenting at the United Nations in New York about how all countries can include people with intellectual disability, or our Hard to Swallow campaign, which has received over 25,000 petition signatures.
These are just some examples of how people with intellectual disability are standing up and being heard through the important advocacy work of organisations such as CID.
Too precious to lose
Government funding for advocacy is important for sustaining organisations such as CID. Losing that funding would threaten our very existence. And, as the Bigby and Henderson report finds, there is a lot to lose:
“If [CID] were to fold, governments would lose an organisation that has held them to account and also a critical and effective means of involving people with intellectual disabilities in service design. They would therefore lose a key way of understanding whether policy intentions and service design reflected needs on the ground.”
Many government decision makers also see the value in our advocacy work. When Anthony and the CID team finished their testimony to the NSW Parliamentary inquiry into the NDIS, the Chair thanked them for their ‘very strong and clear’ evidence, and added:
“Thank you for the wonderful advocacy work that you do. The representation in advocacy work is important, not just to get us up to this point, but for the ongoing work to be done to ensure that this achieves our intentions.”
It is heartening to read Bigby and Henderson’s independent support for our advocacy work, and to know that many decision makers also see the value of disability advocacy organisations such as CID.
- Download an Easy Read version of this blog.
- Read the full report Raising the voices of people with intellectual disabilities and changing systems: the contribution of NSW Council for Intellectual Disability to Social Change, which also had an Easy Read summary.
- The Stand By Me campaign to save disability advocacy.