Motions

Disability Advocacy

Ms COOK (Hurtle Vale) (10:44): I move:

That this house—

(a) recognises that the many progressive advancements for South Australians living with a disability could not have been achieved without strong, steadfast advocacy;

(b) accepts that the safety and rights of South Australians living with a disability are only safeguarded when advocates are empowered to speak truth to power on behalf of their clients;

(c) congratulates South Australia’s strong disability advocacy sector on the role they play in holding state and federal governments to account and on helping us as legislators better understand the issues affecting their clients;

(d) laments the delay in the Marshall government properly funding and implementing a state disability advocate, despite this being an election commitment of the government before the last election; and

(e) calls upon the Marshall government to finally act upon its election commitment to create a South Australian disability advocate to better enable South Australians living with a disability access to the public advocacy they so rightly deserve.

As I commence, I acknowledge that there have been some changes within the sector and there is currently a Disability Advocate in place. When the motion was originally proposed, that was not the case. However, I will talk to some points that I believe still should be addressed in terms of the position of Disability Advocate.

I rise today to move this motion, which recognises and congratulates disability advocates across South Australia and calls out the Marshall Liberal government for the delays in funding and implementing the election commitment of the Disability Advocate. Many integral and progressive advancements for people living with a disability in South Australia would definitely not have been achieved without strong, steadfast and independent advocacy. Our advocates in this state are true heroes.

Our state's Independent Advocacy service assists in the promotion and protection of the human rights of people living with a disability. Many of our state's advocates have direct lived experience of disability, allowing insight into the lives of those they represent. They ensure that those living with a disability have equitable access to the support and services they need to live fulfilling lives within our community. True inclusion is important to ensure we can all play our part in society. This is particularly true for those who live with a disability, who have rich experiences and skills to offer.

The safety and rights of South Australians living with a disability are only safeguarded when advocates are empowered to act courageously on behalf of their clients. This empowerment comes from protections and funding from government to ensure sustainability of dedicated advocacy service delivery, especially during unprecedented periods of demand, like now and in the future as we navigate turbulence and change.

I thank the government for finally putting in place the Disability Advocate. It did take far too long to implement. It was a long journey. Additionally, unique individual issues experienced by South Australians are outside the scope of the state advocate who only addresses NDIS policy matters. We still do not have a commitment of continued ongoing funding for this position. The position was contracted only for a period of 12 months.

Disability advocacy is a particularly important issue to be talking about, especially during such a huge period of enormous reform, upheaval and change with the introduction of the National Disability Insurance Scheme (NDIS). We have seen how parts of the NDIS are working perfectly. They are providing real benefits to those living with a disability, but there are still problems with the system and people with a disability are without critical supports as a result. The state's advocacy agencies work collaboratively with the state advocate to offer grassroots insight and inform meaningful change.

This collaboration saves money for the state, as demonstrated in Disability Advocacy Network Australia's cost benefit analysis of independent advocacy. This report notes that for every $1 invested by governments in advocacy there is a saving of $3.50 achieved in other systems. It makes economic sense.

Advocates amplify the voice of those who may have trouble expressing their views. I wish to thank the Hon. Kelly Vincent, who was in the other place up until the last election, for her advocacy. The Hon. Kelly Vincent once stated, 'No-one is voiceless. There are only people to whom we haven't learned to listen yet.' That is very poignant, very deep and very meaningful. Advocates help us to listen, and they show us positive ways forward that safeguard our most vulnerable South Australians. They provide much needed support and advice to ensure we can provide adequate services for those living with disability in our community.

I think it is also prudent to mention that the government has not adequately supported the Community Visitor Scheme to allow them to inspect non-government care facilities. It is vital that this continues to occur in order to ensure the best possible outcomes for those with a disability living in care. What is also interesting is that the government is removing this safeguarding role that advocates for many vulnerable individuals in NGO disability accommodation and SRFs at a time of turbulence, when full transition has not yet occurred.

As I mentioned, in a time that is particularly filled with change and disruption, you would think we would want to make sure that there was independent monitoring of services and that individuals were getting value for money as well as genuine choice and control over opportunities that enable them to reach their full potential. Of course, much of this is now happening within the NGO sector.

The role of the community visitor is designed for far more than looking into individual plans and their implementation issues. It also looks at the health system, housing and tenancy rights, transport, education and training, and community participation, and this has resulted in much better outcomes for many individuals. It has also been able to shine a light on abuses that have occurred in institutions.

There is no resistance from any NGO sector members with whom I have spoken to the community visitor entering their sites, and I would like to see this continue. It is a matter of regulation that that could occur. This government needs to commit to continued advocacy support for those living with disability. I urge the government to continue to support all methods of advocacy throughout the sector. I wish to thank all those within the community who act as advocates for vulnerable people.

Ms LUETHEN (King) (10:52): Firstly, I rise to support the motion raised by the member for Hurtle Vale. Secondly, I move to amend the motion, as follows:

(b) delete the words 'only safeguarded when advocates are empowered to speak truth to power on behalf of their clients' and insert the words 'often enhanced when advocates are empowered to speak on behalf of their client, and that individuals with disability and their families are also critical'.

(c) delete the words 'holding state and federal governments to account and for helping us as legislators better understand the issues affecting their clients' and insert the words 'assisting services and state and federal governments to better understand the issues affecting their clients'.

Delete paragraphs (d) and (e).

I am delighted by and proud of the incredible progress and provisions that the Marshall Liberal state government has already implemented across disability reform in our great state. Might I add that the Marshall Liberal state government is committed to ensuring that South Australians living with a disability, including autism, are going to be provided with every opportunity to participate fully in life—at school, in the workplace and in the community.

When we look at the official national statistics on the NDIS we know that, as at 30 September 2018, people with autism, predominantly young people, comprised 29 per cent of NDIS participants nationally, this being the largest cohort. On 16 October 2018, the Liberal-National government announced the release of Australia's first national guideline for the assessment and diagnosis of autism.

This national diagnostic guideline has been developed by the Cooperative Research Centre for Living with Autism (Autism CRC) through independent research and consultation with over 1,000 stakeholders, including adults with autism, family members, clinicians and policymakers, which is why we have not sought to further clog or delay provisions or people who we know make a difference to the lives of people living with autism—quite the opposite.

As per our budget announcement last month, we, the Marshall Liberal state government, are investing more than ever by contributing $752 million to the NDIS in 2019-20. As people and provisions are established and transitioned around our participants with autism, we have committed a $6.7 million one-off funding injection, which will support the finalisation of service reforms, including winding down or transferring most remaining disability operations to the non-government sector, which in turn will help maximise the social and economic benefits of the NDIS.

This national guideline is an Australian first and developed with the financial support of the National Disability Insurance Agency. The federal government continues to commit to work closely with stakeholders to determine how the guidelines can be best implemented across the areas of health, social services and education. We, the Marshall Liberal state government, will also continue to work closely with stakeholders to accelerate people and provisions to assist our autism participants. How, Mr Speaker? Well, I am so glad you asked.

The Marshall Liberal state government has extended funding for people living with autism for up to 12 months, or longer in some cases, to enable services to continue until full transition to the NDIS is achieved. As per the budget, we have the $752 million NDIS contribution in 2019-20. As always, we are building and strengthening the capacity of South Australians. We will continue to fund the existing state disability clients who are either ineligible for the NDIS or are the subject of issues still to be resolved. I must emphasise that it does not sit well with our government to have any of our vulnerable people in the community fall through the cracks.

I trust you will pause with me for a moment while I reflect, honour and thank those individuals, organisations, staff and volunteers who faithfully and excellently support our people who live with autism. I would like to draw attention to Autism SA in particular, which in 1964 set out to improve life outcomes for people with autism spectrum disorder. Autism SA, which is funded by the Marshall Liberal state government, continues to provide the diagnostic services that will not be funded under the NDIS. It is being funded by the South Australian government to June 2021 at a cost of $350,000 annually.

I have previously shared before the chamber the struggles of at least two families in my local area who have asked me for more support. I wish to reiterate that the Marshall Liberal state government will continue to advocate to ensure that the NDIS provides reasonable and necessary supports for all people with a disability, including those with autism. I have been working hard to advocate in King, and more broadly in the northern suburbs, for families who need more support for their children with autism.

In February, a mother came to see me at one of my listening posts in the Grove with her son who has autism, and it was so clear to see the challenge that she, her children and the whole family are faced with in this situation. In addition, a close friend of mine, Allison Gaskin, has taught me about her challenges over many years as she has raised her twin sons who were diagnosed with autism spectrum disorder. Allison resigned from her successful full-time career to care for her sons and to advocate for more support in our South Australian community. I commend her before you and this chamber today for the instrumental voice she has had in raising awareness of the need for further support for families.

Allison has volunteered her time to support families and people living with autism ever since her children were diagnosed. Allison told me, 'My motivation is to make their journey easier.' She told me that people, including her family, go through so much unnecessary hardship and difficulties because there is not enough support, knowledge, understanding and opportunities within the community, but this is changing. As a single mother, Allison has successfully raised her children and they are flourishing now because of her love, strength and devotion. I acknowledge and commend her for her advocacy for her children and other families in South Australia raising children with autism.

The Marshall Liberal state government recognises the important role that advocates—which, of course, also includes organisations, community groups, parents, grandparents, families, carers and friends—play in the improving quality of life, promoting equal opportunities, removing barriers and shaping the reform that we need to see. The Marshall Liberal state government continues to engage with the disability sector, advocacy groups and the community to ensure better outcomes for people living with a disability.

Currently, there are a number of organisations that provide individual advocacy in South Australia, including Brain Injury SA and Disability Advocacy and Complaints Service SA. But in January this year the Marshall Liberal state government was able to provide funding for a state disability advocacy position. Whilst the previous government referenced the need to create and appoint an advocate to represent and speak out for persons with disability, it lacked the foresight and follow-through to allocate budget funds for this position.

Amongst the mess we inherited from the previous government was a big fat gap attached to the salary of the disability advocate—no planning, no allocation, no budget, nothing. I commend the member for Hurtle Vale for her advocacy in the lead-up to the budget to impress upon the Marshall Liberal state government that the massive deficit left by the previous Labor government was a non-negotiable and that we would need to keep looking until the provision of this person could be funded and appointed.

We are delighted with the appointment of the state Disability Advocate position that was filled on 8 January this year by the well-respected Dr David Caudrey. Whilst Dr Caudrey does not replace any existing complaint or individual advocacy system, his role is vital and looks at how to identify and improve any systemic issues related to reform of disability services and the introduction of the NDIS. Dr Caudrey also provides critical monthly updates, information and advice to inform the development of future policy. I commend the Marshall Liberal government for caring enough to make this happen.

Mr BELL (Mount Gambier) (11:02): I rise to support this motion and talk about an issue facing some people living with a disability. I want to talk about the accessibility and significant cost burden of drugs that may potentially have a major impact on a person's quality of life. I have spoken about Mount Gambier mother Katherine Height previously in this house. Katherine has a nine-year-old daughter, Ella, who was born with a rare and incurable form of epilepsy known as GLUT1 deficiency. Last year, Ella was further diagnosed with Jeavons syndrome, another rare and lifelong form of epilepsy, which puts her among the most severe cases known.

Standard anticonvulsant treatment has stopped working for Ella. Katherine has been tireless in investigating the best treatment options for her daughter. This year, they were offered the opportunity to be part of a special clinical trial at Melbourne's Austin Hospital, which involves treatment with gel containing cannabidiol (CBD). This gel has no THC, which is a psychotropic compound, so it is about as far away from the traditional use of cannabis as you can imagine. In this trial, every single cost is covered for participants, including travel, accommodation, even a cup of tea at the airport.

For the last six months, Ella has had had a synthetic gel applied to her arms and legs twice a day. The trial participants are all monitored closely for any positive or negative side effects. For Ella, the results have been dramatic. There has been a 35 per cent reduction in her seizures, and Katherine says that she has more energy and, most importantly, her quality of life has drastically improved.

With such positive initial results, Katherine wants to continue the treatment and is now concerned about accessing the drug when the trial ends. If the drug stops, she is worried that Ella will regress and her seizures will again increase. The gel is only available to participants of the clinical trial, and Katherine has been investigating how to obtain CBD oil here in South Australia. Without subsidisation, the cost of this oil is around $500 for a tiny vial, and Ella would need approximately one per fortnight.

Some people can apply for a compassionate care program in which the cost is reduced to around $270 a bottle, which is still a huge cost for regular and ongoing medication. Here is a conundrum facing families. Obviously, people living with epilepsy already face a significant cost burden with treatment, therapies, travel and medical costs. The best-case scenario would be that this drug goes on the PBS, but obviously there is much work to be done before that can happen.

With no other options, Katherine said that she will have to consider fundraising, or even try crowdfunding, to fund the medication for her daughter. This is on top of the fundraising she already does to fund services and workshops to help other people with epilepsy in the Limestone Coast because epilepsy is not funded through the state government. It concerns me greatly to think that South Australians are considering crowdfunding to pay for essential medical treatment for their loved ones and that South Australians are having to travel to other states to be part of clinical trials.

Obviously, it is still early days with medical cannabis and there is intense work to be done in research and clinical trials. There is evidence that CBD could also improve the lives of those living with Parkinson's, multiple sclerosis, schizophrenia and other mood disorders, type 2 diabetes and anorexia. A measure of government is how they look after minorities and those who need our help, care and assistance. For me, we need to start looking at ways in which CBD can help South Australians who desperately need it.

Right here in South Australia, I have confidence in excellent facilities such as SAHMRI and companies such as GHD pharma and LeafCann. This year, the LeafCann group announced that they will move ahead with plans to construct a world-class facility in Adelaide after being granted a licence to manufacture medical cannabis by the Australian Office of Drug Control. As with any new drug, accessibility and cost are always major factors.

As a state government, we need to be doing what we can to investigate how we can offer cost-effective solutions to those who desperately need them as treatment options. It is clear that there is significant public support and plenty of demand for medical cannabis. A couple of months ago, the Minister for Health, the Hon. Stephen Wade in the other place, along with the member for Waite, convened at Parliament House a round table of parents whose families are affected by epilepsy. Every family member talked about access to cannabidiol and the impact it has had on their children's life in reducing seizures and improving the quality of their life.

If there was a clear message out of that round table, that forum, it was that $500 per fortnight as a treatment option is prohibitive. There were parents who are mortgaging their house and taking on second jobs just to pay for the vital medication that they see making a real difference to the quality of life of their loved ones.

I have been vocal about the fact that I would like to see the Limestone Coast become a major hub for this industry. I would like to see regional development strategies like this taken into consideration. This is a discussion we need to have for people like Ella and Katherine Height. I know all these issues are firmly on the radar of the minister and, as I said, I commend him for the good work that is being done in this space. Katherine said she was grateful to meet with the Minister for Health, Stephen Wade, and appreciated his listening to their concerns in this area.

The first part of this motion talks about how advancement for South Australians living with a disability could not have been achieved without strong, steadfast advocacy. Katherine Height is the epitome of this statement. Without reward or fanfare, she continues to advocate, fundraise and fight for services and, although she does it for Ella, the benefit is felt by every South Australian living with epilepsy. I thank the house for listening to her story.

Ms COOK (Hurtle Vale) (11:10): Thank you to the members for King and Mount Gambier for their contributions. It is a privilege to stand in this place and be an advocate to some degree for the people who live in our communities, and the member for King has done a great job with that. I also want to take this opportunity to reflect a bit on the work done by the previous minister for disabilities, our member on this side Katrine Hildyard, who progressed quite a lot of work in relation to the implementation of the disability advocate.

As I stated, we anticipated that the government would want to make some amendments to the motion, as it was tabled before the Disability Advocate had been put in place. So, along with some of the minor changes to language within the motion, we have no issues with any of the amendments and we will support those amendments.

I know that a chunk of the speech the member for King gave would have been provided to her, with some information from the department around the funding and machinations of the NDIS, the Disability Advocate and the bridging funding that is coming in this budget for the NDIS transition. I make a plea to the member for King, with her strong advocacy particularly for people living with autism, to broadly reach out to the community and organisations to find out if they are satisfied with the bridging that is being made available as it has been sold to you, because I understand that there is nowhere near enough bridging money being applied to many of the organisations that in our state are strongly advocating, as well as delivering services, for people living with a disability.

As the member for King pointed out, their commitment as the Liberal Party is to say very loudly that they will not see people fall through the cracks—well, join the call. We on this side will also not see people fall through the cracks. For that reason, we need to have as much money invested in the bridging or the transition from Disability SA care and state block funding to NDIS and to look deeply into the statistics of people transitioning who say that 25 per cent of people with a certain diagnosis have transitioned.

This is particularly poignant for people with a mental health issue. We are hearing that 25 per cent are currently transitioning to the NDIS. What is happening, in fact, is that pretty much nobody who is homeless with a mental health problem is transitioning to the NDIS, so those services providing programs for people who are homeless and have a mental illness, which is 77 per cent or thereabouts of people living rough, are not accessing the NDIS.

When the cuts to funding are happening to homelessness services and homelessness providers, because of the cashing out of money to the NDIS, those services will be left with 25 per cent less money and the same number of people. That mathematics simply does not work, so my call to people like the member for King, whose heart is in the right place regarding advocacy for people with disability, is to join that call within her caucus and put the money where the mouth is, so to speak.

Again, thank you to all of those in the advocacy space, thank you to the independent advocates, thank you to family members, thanks to other members of parliament and thank you to members of the public who reach out and tell stories. Storytelling is such a powerful way to ensure that we get the right deal for vulnerable people living in South Australia. I commend the amended motion.

Amendment carried; motion as amended carried.