A view from the back of the bus: a reflection on the need for a culturally responsive NDIS

2 February 2017 | Posted In: #131 Summer 2017, CALD Communities, Disability – National Disability Insurance Scheme, Disability Issues, Human Service Delivery, Planning for People and Social Issues, | Author: Diana Qian

People with disability from culturally and linguistically diverse (CALD) backgrounds make up only a small proportion of people who are currently disability service recipients. Diana Qian argues greater resources are needed to ensure people from CALD backgrounds have equal access to the National Disability Insurance Scheme (NDIS).
I came to Australia in 1988 when I was thirteen. I missed the introduction of Medicare but was not too late to witness another equally significant social reform unfold; the implementation of the NDIS. It is hardly possible to be a passive bystander when I know something really positive is about to happen. Many lives will change for the better and Australia will be a fairer place to live for everyone. The NDIS is so close to home not just because I’m a person with disability but also because I believe in equal rights regardless of gender, ethnicity, disability or sexual orientation.

The United Nation’s Convention on the Rights of Persons with Disabilities, to which Australia is a signatory, came into effect in 2008 affirming that people with disability should enjoy the same rights and opportunities as their abled-bodied counterparts to social, economic and political participation. The Convention tells me that as a human being, I’m no less of a person than the person sitting next to me and I’m entitled to supports that allows me to do something with my life and be a contributing member of my community. However, words are just words without practical implementation.

The NDIS is a critical aspect of the Government’s commitment to meeting its obligations under the Convention. The $22 billion Scheme will revolutionise the way people with disability access the support we need to lead ordinary lives and be visible members of the community. We will no longer be passive recipients of an inflexible service system that at worst kept us segregated from society and at best gave us a choice of going bowling or going bowling. With the promise of gaining more choice and control in our lives under the NDIS the ‘beggars’ can now finally be ‘choosers’.

But how do we choose and how do we take control? It’s a steep learning curve for us when many people with disability have had very little opportunity to make decisions for ourselves. More often than not, we get told what’s best for us by professionals. Recognising the need for capacity building and motivated by a vision of an inclusive society, a group of likeminded people (including myself) came together and formed Diversity and Disability Alliance (DDAlliance). It’s a disability support organisation run by and for people with disability from culturally and linguistically diverse (CALD) backgrounds with the support of families and allies.

DDAlliance’s definition of CALD refers to people who are born in a non-English speaking country or have at least one of their parents born in a non-English speaking country or speak a language other than English at home.

We believe in diversity, full inclusion and the power of a collective voice. We want to support people to live the lives they choose by developing their knowledge, skills and capacity. We also want to build the capacity of all communities to include people with disability.

For two years, since DDAlliance’s inception, we’ve been an active contributor to NDIS policy and implementation in the hope that it will be an equitable system for people with disability from CALD backgrounds. Nationally, people with disability from CALD backgrounds make up 25% of the disability population. This percentage is even higher in NSW. Yet only 6% of the people currently accessing funded disability services are from CALD backgrounds. This means three in four miss out on receiving disability support because of their language and culture. Lack of access to information in community languages and interpreters is just the tip of the iceberg when it comes to the range of linguistic, cultural and religious barriers people experience.

Since the Productivity Commission’s report in 2011 on disability care and support which paved the way for the NDIS, it is widely quoted that the disability system is ‘broken’. For people with disability from CALD backgrounds the system is also grossly discriminatory.

DDAlliance looks to the NDIS as the once in a lifetime opportunity (just when do you get to design a system from scratch) to undo past wrongs and give people with disability from CALD backgrounds the support we need to play catch up. The national rollout is in full steam and we are really concerned that the institutional racism that permeated the ‘broken’ old system is being allowed to continue unaddressed.

I think it was Einstein who said: “The definition of insanity is doing the same thing over and over again, but expecting different results”. Unless the views and experiences of people from CALD backgrounds have been considered and incorporated in the design of NDIS from the start, we can hardly expect the access rate of people from CALD backgrounds in the NDIS to be anything but disappointing. According to the National Disability Insurance Agency’s (NDIA) latest quarterly report the percentage of NDIS participants from CALD backgrounds is only 4%.

To make a bad situation worse, the arrangement for the full transition to NDIS commenced 1 July 2016 and gave priority to people who are already disability service recipients. Although it’s not explicit that new applicants will be pushed to the back of the queue, the sheer volume of work involved in processing current service users will mean exactly that in a practical sense.

Given that the vast majority of people with disability from CALD backgrounds are not in the existing service system we are being disadvantaged yet again in the rush to get onto the bus. Not to mention that many people from CALD backgrounds are not even aware that there is a bus and how to find the bus stop. It hardly seems fair, or sound policy, that the people who are struggling with no support because of the inaccessibility of the old system are being left behind again by the new.

Making certain groups of people sit at the back of the bus is considered to be a thing of the past as societies’ consciousness of universal human rights grows. But at times history has the habit of repeating itself if we don’t translate words of rights and equity into actions. 25% of the disability population deserves 25% of the implementation efforts. As only 6% of existing service users are from CALD backgrounds we should be able to see 19% of resources directed exclusively to developing culturally responsive policies and workers. There should be accessible information reaching out to CALD communities which is much more than a fact sheet and there should be priority for direct engagement with people with disability in those communities.

It needs to be said that our criticism of the implementation does not reduce our belief in the vision and potential of a NDIS. A person centred and flexible system will greatly benefit the lives of people from CALD backgrounds, their families and communities. We recognise the enormous challenges facing all stakeholders, as change is never easy, especially at such a scale. However, as everyone gets caught up in the ‘doing’ it’s critical that we don’t lose sight of the vison and purpose of our actions. A pause amidst the chaos allows us to ask whether the decisions of today will lead to the realisation of a fair and equitable system for everyone.

Diana Qian is President of the Diversity and Disability Alliance, a user led disability support organisation, run by and for people with disability from diverse backgrounds with the support of families and allies. Please refer to their website www.ddalliance.org.au  for more information and how you can support their vision.