Disability Advocacy Parliamentary Roundtable

From June 2018 the New South Wales state government have signed over disability services funding to the federal government as part of the NDIS agreement and will no longer be funding disability advocacy. However, the NDIS is not a system that was ever designed or intended to pay for things like systemic advocacy, and it will not fund individuals to the extent that would replace the current funding arrangement, so this “switch” in funding arrangements will in reality be a significant decrease in funding that will disadvantage the disable community.

Family Advocacy, an advocacy organisation I am proud to be a member of, invited me to attend a Parliamentary Roundtable, where I spoke to the parliamentary Labor party (the current opposition party) along with members of  an alliance of other advocacy organisations. Speakers talked about the impact the loss of advocacy funding will have on the disabled community and their families and asked the Labor party to commit to continue funding disability advocacy if they are elected. I’m pleased to say that the leader of the Labor party, Luke Foley, was able to be present and assured us that his party is committed to continuing funding for disability advocacy should they be elected. Good news!

Below is a copy of my talk. I’d like to thank Meg from Family Advocacy for her help in preparing this. Meg and the team at Family Advocacy do a great job supporting disabled people and their families advocating for their rights and interests. They also have a great resource library. {click through to see their website here}.

Here is what I said during the meeting:

Hello. I am Michelle. I am autistic. I am mother to 6 children, 4 of whom have diagnosed disabilities, and I am a member of Family Advocacy. I work as a peer support mentor and advocate for neurodivergent people in my local community in the Blue Mountains. I volunteer with autistic led community groups that offer support to our autistic peers around Australia. My interest in seeing the continuation of disability advocacy funding in NSW is both personal and on behalf of my community.

On a personal level, I have seen the advantages of having access to disability advocacy funding in my own family. In 2012 the introduction of the Every Student Every School policy, although I supported the idea of increased autonomy for individual schools, unfortunately resulted in the withdrawal of two of my children from public education settings as they lost their individual funding packages and therefore their access to teachers aide advocates within their school environments. This  meant that my children struggled to communicate their needs independently and suffered an increase in stress and experience of bullying to the point that they were better off not attending school.

As a strong believer in inclusion this decision was difficult for me to make as I know the value of all children attending school with their age peers. As an autistic parent I could have benefitted from some support myself in my negotiations with the schools but sadly did not have access to any at the time and I did not learn about Family Advocacy until a few years later. Had my family been resourced with more information and support I believe my children would have been able to continue at school.

I am not alone in my situation. In my local area there are many families home educating students due to lack of advocacy and support to navigate the public education system with their disabled children.

Now that I know of advocacy groups I encourage families in my community to access that support, and at times I offer it myself. Having an advocate to stand with you, or support you from behind the scenes, and talk to school staff about your child’s needs and rights makes so much difference in ensuring disabled students can continue to access mainstream education alongside their peers.

Advocacy by families is important because even though families always have and always will advocate for their family members with disability, whether funded or not, having disability advocacy run by and for families helps families to pursue advocacy where the person with disability is the priority.

It helps people to get away from the insidious idea that disabled people are a burden or need to be shut away in separate places, and helps them focus on their son or daughter’s rights, interests, and desires.

It can also make the disabled person voice heard if they are not able to be heard by themselves – for example, in the crucial period when they are a baby, a child, and later when a person either does not have the capacity or desire to advocate for themselves.

And it is not just in education settings that I see the benefits of advocacy support. Accessing community places and events, negotiating the NDIS system, talking to local council about physical access needs, and ensuring access to quality independent housing for disabled adults are all areas in which disabled people and their families benefit from advocacy support.

As much as individual and family support for specific situations is much needed and valued by the disabled community and their families, there is also a need for systemic advocacy. Disabled people have so much to navigate in their daily lives that we rely on the help of others when there are issues of policy, law and human rights that need to be addressed.

As a mother of 6 it is hard to find time to do all the things I need to in a day. As an autistic mother, with my own sensory, communication, and executive function challenges it is even harder. Knowing that there are places online I can go to and find accurate information, community support and understanding makes an incredible difference in my life.

Now that I am in touch with advocacy organisations I am much more likely to speak up about my needs and my children’s needs as I know that there are others standing with me and people and groups who will continue the work of advocacy when there are times I do not have the energy to continue.

The existence of advocacy organisations serves to decrease feelings of isolation and overwhelm for people like me, and quite frankly the thought that they may cease to be able to provide that kind of support causes me considerable worry. Not just for myself and my family, but also for my community. We need help to ensure that our rights are not overlooked and the loss of funding for disability advocacy will take that help away and put the disabled community at risk.

The three images above show me sitting at a table holding some papers in my hand from which I am reading my speech. I am wearing a red shirt, and the walls of the room are also red, which did lead to some jokes about appearing to be a floating head when we took photos standing directly in front of the wall. 

 

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