Latest news with #IntellectualDisability
ABC News
10-07-2025
- Health
- ABC News
Disability-led research project exploring when safety becomes a restriction for adults with intellectual disability
Like most young adults, Ruth Faragher is navigating independence. The 29-year-old, who has Down syndrome, has lived in a share house, managed her money, gone on holidays with friends and secured work across different universities. Ms Faragher said she had always been supported by her family to try new things. "Sometimes I make mistakes, but everyone does," she said. In her latest role at the University of Queensland (UQ), Ms Faragher is part of a team researching when protection becomes restrictive for adults who live with an intellectual disability. "Support workers need to know how to decide what to do," she said. "[In] some situations they should take over. The study is one of 15 disability-led research projects focused on improving safety for people with disability which have received funding from the National Disability Research Partnership (NDRP). The projects aim to address critical safety gaps identified by the disability royal commission, which was handed down in 2023 and contained more than 200 recommendations for change. Leading the research is UQ's Professor Rhonda Faragher, who is also Ruth's mum. The inclusive education and diversity professor said she believes sometimes people with intellectual disabilities are wrapped in cotton wool by those who are supporting them. "The more you protect people, the less they have [the] opportunity to learn and grow and to develop their own autonomy," Professor Faragher said. The first phase of the study involved hiring and training people with intellectual disabilities as research assistants to help co-design the study's proposal. She said its end game would be to provide "helpful guardrails" for National Disability Support Scheme (NDIS) workers, as well as parents and carers, so they could best support people with intellectual disability. "We at no point want to suggest that we should remove support or we should make everybody pretend to be independent," Professor Faragher said. "It's not something that I think is a good goal for people." She said it was important to find a way of "making sure that people can continue to live lives of meaning and purpose" while not being "overly constrained". "We want to explore how to balance that," Professor Faragher said. NDRP CEO Mary Sayers said her organisation chose the theme of safety for the projects because it impacted "all elements of people's lives". "The disability royal commission told us about some of the systemic injustices that are happening for people with disability that are leading to violence, abuse and neglect," she said. The commission heard from almost 10,000 people with disability, their families, and advocates over more than four-and-a-half years. "This first funding round supports co-designed research that was recommended by the royal commission, that people with disability are at the forefront of the solutions that are needed in their life," Ms Sayers said. The NDRP received funding from the federal government to support the research program. The independent non-profit distributed $900,000 across the 15 projects, which will be followed by more funding for larger projects. Some of the other projects will investigate topics including how families of children with disability experience family violence and whether group homes are the safest option for people with intellectual disability. The NDRP has been in development since 2000, but formed as an independent organisation only a year ago. "It was established to strengthen the disability research ecosystem," Ms Sayers said. "Putting people with disability at the forefront of that research ... can really impact on policy and practice." All the projects are expected to run for six to 10 months and will involve university researchers working with people with disability, First Nations people, disabled people's organisations, and culturally and linguistically diverse communities. "This funding round is designed to support relationship building and knowledge sharing, and the grants will help research teams to deeply understand the issue by hearing different perspectives," Ms Sayers said. Down Syndrome Australia CEO Darryl Steff said the projects would all contribute towards the outcomes recommended by the disability royal commission. Mr Steff, who is also involved in the UQ study, said that "disappointingly", since the royal commission's final report was handed down, there had only been "some change".
RNZ News
17-06-2025
- Health
- RNZ News
Health NZ criticised by Family Court Judge for legal appeal ‘distraction'
Photo: RNZ / Angus Dreaver A judge has chastised government agencies for wasting public money and the court's time trying to recall her judgement criticising the living conditions of an autistic man held at Auckland's Mason Clinic. The man, who has been detained in near-isolation for 19 years, lives in noisy conditions despite his extreme sensitivity to loud sounds and a belief he should be moved. The man, who cannot be named for legal reasons, last year became so distressed by construction noise next door he twice stuffed paper into his ears , requiring doctors to remove it. In a September judgement, Family Court Judge Penelope Matalavea (formerly Ginnen) criticised the man's "untenable" situation, stating the Health Ministry's inadequate funding hindered his quality of life. The man has been detained under the Intellectual Disability Compulsory Care and Rehabilitation Act since 2006. His care order has been extended 11 times as experts have repeatedly assessed him as being too dangerous to release, and he has spent the past five years mostly in seclusion at the Mason Clinic. The Supreme Court heard an appeal from the man's mother in August arguing his detention is unlawful. Ten months on, the court has yet to issue its decision. Auckland's Mason Clinic, where the man at the centre of the legal argument is held. Photo: RNZ / Cole Eastham-Farrelly In November, the ministry and Health New Zealand made an application to recall Judge Matalavea's September decision, saying the court had been "misinformed". It said there had been 14 "notifiable incidents" that had occurred regarding the man's behaviour that had not been reported to the ministry by the Mason Clinic until weeks after they had occurred. The ministry said the failure to include these incidents at the hearing may have led to Judge Matalavea misunderstanding the constraints and limitations around the care provided to the man. In a decision released today, Judge Matalavea called the recall application a "distraction" and questioned the amount of public resource being put into it. "I noted public funds are constrained, and it is all public funds that would be applied to the two-day hearing. Everybody, from me as the Judge, to the litigants and the lawyers and the district inspector is publicly funded." In May, the ministry proposed an alternative, seeking permission to withdraw its recall application and instead file affidavits with the court to ensure its evidence sat on the file. In her decision, Judge Matalavea supported that idea, giving the ministry leave to file the evidence, though she conceded such action was unlikely to have any impact because her decision had already been issued. "This is an unorthodox approach, but a pragmatic resolution to a complex situation." Given the complexity of the case and the fact that all parties were publicly-funded, Judge Matalavea gave no order for costs. Human rights lawyer Tony Ellis, who was counsel for the man's mother, told RNZ he would be appealing the no costs ruling. "I'm not publicly funded, I've been doing this work for eight years for free." Ellis said he had told the court several times that he received no fee at all. He was also disappointed that while this legal stoush had been going on, there had been no change in the man's living situation. "And ten months after the Supreme Court hearing we are still waiting for the decision. It's not a very satisfactory result for the man or his mother," Ellis said.
