Disability Royal Commission hears from witnesses during proceedings in Alice Springs

A mother has been forced to send her disabled son 500km away to get the support he needs. Read her story here.

A MOTHER and son have been forced to live hundreds of kilometres apart because of a lack of disability services in their remote community.

Appearing under the pseudonym Daisy, the mother of three told the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability that her son had been moved more than 500km away to a carers home.

Questioned by Assisting Counsel Avilena Tarrago, Daisy said her son was unable to access speech therapy in their Northern Territory remote community.

Daisy, who uses a wheelchair for mobility, explained there was little support for her and her son, and she often relied on extended family and community for daily support.

Her son had originally been able to live in a group home close to his mother but therapeutic services, including speech and physiotherapy had been limited, the commission heard.

Giving evidence in English, Daisy, a First Nations native speaker, answered closed questions from counsel.

“But he couldn’t stay in that house for very long and it was after that you thought it was better for him to (move away)?” Ms Tarrago asked.

Daisy confirmed this but said she missed her son “very much”.

The three commissioners of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability listening to witnesses in Alice Springs. Picture: Supplied

Another witness, appearing under the pseudonym Joan, provided the commission with further details of Daisy’s son.

“The agency decided that they would withdraw NDIS funding … and in doing so it meant that he (Daisy’s son) was going to be without a home,” Joan told commissioners.

“Consequently they made a mandatory report to Territory Families and had him removed from his mother effective immediately.”

Joan firmly told the Royal Commission that decision was history repeating itself.

“He became what would always be regarded as part of a stolen generation, even now when it is people, young people, children, are being taken from Aboriginal families,” she said.

Joan told commissioners that the NDIS was not fit for purpose and required people to have a “degree in NDIS” to be able to navigate the system.

“There needs to be full consideration around how to get people to country and get them back to country supported and being able to build the services,” she said.

“I believe there needs to be extreme diligence around transparency and integrity and safety and security for people but the families who are out there on the remote communities need to be afforded the liberty and the freedom to be able to provide the services themselves to the family members.”

When talking about her own disability, Daisy shared photos of her wheelchair that for a “long time” has had a cracked and broken armrest.

She said for years she was forced to wear a jumper to stop the armrest from scratching her skin before giving evidence about her defective electric mobility scooter.

Daisy gives evidence about her wheelchair at the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Picture: Supplied

Her electric mobility scooter had a faulty battery for a “long time” she told commissioners, recalling how it once broke down meaning she was stranded until family came along to help.

Daisy lives in a part of the Northern Territory that can reach temperatures in the mid 40Cs during summer and minus degrees in the winter.

“Lucky family came past,” Ms Tarrago said.

“Yeah they pulled over and helped me push the scooter up,” Daisy said.

She was then forced to use the manual chair that severely impacted her independence.

“Stay home. And wait for someone to push me,” she told the Royal Commission when asked if it was easy to get around town.

Daisy recalled the NDIS having an office in her town during the initial roll out of the scheme but said there was “nothing” available now.

As a result of the NDIS not providing an office in her remote community, Daisy said she no longer knew how much funding she had or what it could be spent on.

She explained that she would like to know but she “didn’t know where to go”.

Finally she concluded her evidence by asking commissioners to consider more transport for people with a disability in remote communities, to help them get around town but also travel between communities where services might be more accessible.

She then asked for remote housing to include ramps and accessibility options when they are built.

WHAT THE ROYAL COMMISSION AIMS ACHIEVE

FIRST Nations people have given evidence at public hearings in Alice Springs for the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

Almost 30 people with a combination of First Nations disability lived experience and those working in the disability sector will provide evidence to commissioners Ronald Sackville AO QC (chairman), Andrea Mason OAM and Alastair McEwin AM.

The inquiry will explore if the National Disability Insurance Scheme is fit-for-purpose for remote and very remote people.

Mr Sackville opened the hearings with stark statistics of chronic underfunding and inaccessible services for people in remote.

“We know that First Nations people with disability are less likely to have their applications to become NDIS participants approved than non-First Nations applicants,” he said.

Mr Sackville said evidence showed the “complex and bureaucratic nature” of the NDIS compounded difficulties in access particularly for those with linguistic, cultural and literacy barriers.

“Fourthly, (there is) a lack of appropriate qualified and knowledgeable service providers in remote and very remote areas,” he said.

National Aboriginal community Controlled Health Organisation (NACCHO) chief executive Pat Turner provided evidence that many First Nations people with disability did not trust “institutional care”.

“Distrust arising from both personal and historical experiences of First Nations people includes, as we have heard at other hearings, the history of colonisation and dispossession, racism and intergenerational trauma that compound the distrust associated with endemic poverty in some area and lack of decent housing in many remote communities,” Mr Sackville said, regarding Ms Turner’s evidence.

Assisting Counsel Patrick Griffin SC introduced the full list of witness who will provide evidence over the coming five days, some of whom will speak under pseudonyms.

He explained the purpose of the hearing and suggested some findings might consider less homogenous approaches to accessing and providing NDIS services.

“It will raise an issue (that) whether spending more money on a family-centred approach would not only be more effective for the people (in remote and very remote communities),” he said

“But may in fact be cheaper in dollar terms to the Australian community because of a reduction in allied health and criminal justice issues which often arise.”

He said a report found disability support services in remote communities were either non-existent or limited to basic care and allied health programs and that these services were inadequate for people with complex needs.

Assistant Minister for First Nations’ Health Malarndirri McCarthy said living with a disability can be challenging enough.

“...Unfortunately no surprise this experience can be even more difficult in remote areas with the added challenge of distance,” she said.

“It’s not only challenging for people living with disabilities, but also their family members who work incredibly hard to care for their loved ones.”

Senator McCarthy who also has a son with disability said the Albanese government was committed to supporting Aboriginal and Torres Strait Islander people with disability.

“Included in the Labor Party’s NDIS policy is the commitment to appoint a senior officer within the NDIA to tackle the barriers to service delivery in remote areas of Australia and other areas,” she said.

“The Albanese Government understands more needs to be done working with communities to ensure the Scheme is working better in remote areas.”

NDIS IN THE NORTHERN TERRITORY

IN THE Territory, people with NDIS schemes have struggled to spend their funding due to a severely understaffed sector and a lack of culturally appropriate services in the bush.

In March, Territory Disability Minister Ngaree Ah Kit said she was committed to ensuring NDIS participants in remote communities could remain on country while receiving the support they need.

Ms Ah Kit said there was a need to develop a different approach to how the NDIS could work better in remote and very remote communities.

“I am committed to ensuring that NDIS participants in remote communities can remain on country and receive the support they need,” she said.

“I will be inviting Minster Shorten to visit the NT to directly engage with Territorians with a disability, service providers, carers and guardians to hear first-hand their experiences and to discuss changes to the NDIS.”

Sally Sievers is the acting Children’s Commissioner

Territory Anti-Discrimination Commissioner Sally Sievers said this week’s hearings were an important step for people understanding the unique challenges those in remote and very remote communities face.

“It is incredibly important for those giving evidence this week to be heard and be seen, along with their families,” she said.

“Having a hearing in a place like Alice Springs ensures the commissioners get a real sense of the unique challenges people outside of the capital cities deal with.”

As of April 30, 2022 there were 4855 NDIS participants in NT of which 50 per cent identify as Aboriginal compared to 5.7 per cent nationally.