Expert Warns Safety Concerns for Children with Disability Will Affect NDIS

A leading disability expert has warned that the safety concerns of young people with disability will limit the potential for the National Disability Insurance Scheme to nurture strong support relationships with workers.

Dr Sally Robinson, a senior research fellow leading the disability research agenda at the Centre for Children and Young People, gave a presentation on Monday at the Australian Social Policy Conference in Sydney.

Her presentation looked at what was important to children and young people with disability regarding safety in institutional settings, based on a research report she published in February last year.

This report examined the findings from a participatory study, conducted for the Royal Commission into Institutional Responses to Child Sexual Abuse, in which 22 children and young people took part, alongside family members and service providers.

Robinson told Pro Bono News the study looked to address three key questions.

“Our research asked ‘what does being safe mean to children and young people with disability and high support needs?’, ‘what helps and hinders them from feeling safe in different institutional settings?’ and we also asked people who provide support to young people how they perceive and respond to these children’s concerns,” Robinson said.

“The methods we used weren’t standard research methods. In order to work carefully and methodically with young people and be responsive to their preferences and support needs, we used a range of different and quite creative methods. These included pictorial mapping, storyboards and walk along interviews, so people who communicated in [non-traditional ways] could be understood.”

She said the study uncovered a wealth of information from these children around their safety concerns, which had implications for the rollout of the NDIS.

“They talked a lot about not trusting strangers, but no one was able to identify who was a risky stranger or someone who it would be possible to form a new friendship or relationship with,” Robinson said.

“That’s really significant, because if people are withdrawing from the new people in their life because of some kind of concern or risk, it really limits the potential for things like the NDIS to build community capacity. So we need some really careful and supportive ways to help young people with complex needs [in order for them to] learn how to identify who’s a safe new person in their lives.”

.@SalRob310 discusses what’s important to kids + young ppl w disability about safety in institutional settings #ASPC17 pic.twitter.com/vxQUHfzD49

— SPRC UNSW (@SPRC_UNSW) September 25, 2017

Previous research found that children and young people with disability experience significantly higher rates of abuse and violence than non-disabled peers.

Robinson said this was evident during the study, and only added to some of the significant barriers affecting these children and young people.

“Even though we didn’t ask young people about their experiences of abuse, over 50 per cent of people in this research talked about their previous experiences of abuse,” she said.

“Some of their [other] fears were things that happened frequently in their lives, like feeling out of control in situations. They were worried about this and the impact of having experienced previous forms of abuse.

“They also feared being under-supported when they transitioned from one service type to another. And they talked about the impact of complexity in their family life, with a number of people in the study not living with their birth families, and so I think we need to be really careful that we don’t label institutions as bad places and families as good places because it’s a more complex picture than that.”

Systemic limitations and failures, segregation, lack of choice and discrimination were other barriers made clear during the study, which made it difficult for those with disability to assess where the risk of harm comes from.

“Almost all the children in this study had really weak affiliations with mainstream institutions apart from school. The main places they spent their time at were disability services,” Robinson said.

“What [became clear] was that children were limited by systemic limitations and failures. These segregated lives meant even though they were surrounded by staff who clearly cared about them and wanted the best for them, the lack of choice and a [systematic] level of discrimination really affected them, because they had really different living patterns to children without disability.

“This made those children vulnerable due to the ways that institutional practises acted to isolate them from their local community, and from long term support relationships. Connected to that is the work we have to do to help children and young people and their supporters also, to recognise and assess where the relative risk of harm comes from.

“There is always this talk of ‘stranger danger’, but we know sadly that a lot of this risk comes from people that are already known to them or people in their service environment.”

Robinson said this connected to the NDIS, and the nature and quality of the support relationships it hoped to build between young people and workers.

“As the NDIS goes forward, there are huge opportunities for workers to be building great community connections and supportive, protective safety connections for and with these children,” she said.

“But there’s also a reality that this provision of support is potentially going to be less monitored… and in that context the priority on relational support that protects young people from harm is really clear.

“We haven’t really grappled yet what this means in terms of safety. The NDIS quality safeguards framework has not been implemented and it remains to be seen how effective it will be to deal with the nuances of those relationships at an individual level.

“Community capacity building is really important as well. The NDIS really needs to have traction in order to build the relationships that are transformative. If we can’t find ways of crossing those bureaucratic barriers, then we’re not really getting into the ways that young people and children live their lives.”   

Overall, Robinson said this study was important to give children and young people with disability a voice, and to help foster active participation, so this vulnerable group can be better involved in decisions affecting their lives.

“It shows these young people with disability can share information in creative ways about things that matter to them in all kinds of areas, including health and education and the disability support services they receive. And that kind of active participation is so important for us to build,” she said.