Acknowledgements

1. People with cognitive disability in trouble with the law: The place for relationship-based practiceDr Kathy Ellem Keynote Presentation ASID Conference “Let’s shake it up, human rights for everyone”, Gold Coast Queensland 14-16 November 2018

2. Acknowledgements • Professor Jill Wilson, UQ • Dr Marie Knox • Professor Wing-Hong Chui, CityU Hong Kong • Mr Morrie O’Connor, Community Living Association • Ms Sue Williams, Community Living Association • Dr Kelly Richards, QUT • Associate Professor Angela Dwyer, UTas • Ms Nancy Grevis-James, Queensland Police Service • Professor Leanne Dowse, UNSW • Associate Professor Philip Mendes, Monash • Dr Susan Baidawi, Monash • Dr Louisa Smith, UoW • Professor Pamela Snow, La Trobe • Ms Amanda Jones, Berry Street • Ms Renee Mills, Community Living Association • Ms Nirosha Boaden, UNSW • Dr Lisa Hamilton, QUT • Dr Michelle Denton, UQ • Dr Terry Cumming, UNSW • Associate Professor Iva Strnadova, UNSW • Dr Jung-Sook Lee, UNSW • Community Living Association • NSW Department of Family and Community Services • Berry Street • Jesuit Social Services • Life Without Barriers • All participants in studies

3. Anakin • Early 30s, intellectual disability and cerebral palsy • Under child protection from an early age • Experiences of physical and sexual assault in hostel accommodation; financial exploitation from others • Pointed a toy gun at service manager • Sentenced to prison • Concerns he was a “drug mule” – strip-searched daily People with cognitive disability in trouble with the law | November 2018

4. Aims Making a stand for relationship-based practice • Between professionals and people with cognitive disability • Between services • Between systems People with cognitive disability in trouble with the law | November 2018

5. The Research Projects People with cognitive disability in trouble with the law | November 2018

6. Cognitive disability Intellectual impairment (esp. borderline and mild) Autism spectrum disorder Acquired brain injury (including Foetal Alcohol Spectrum Disorder) People with cognitive disability in trouble with the law | November 2018

7. More than the label • Rejection and loneliness • Personal relationships, service rejection, community rejection, substitute care • Poor health • Physical and mental health, substance misuse, gambling addictions • Violence • Racism, sexual/financial/emotional/physical exploitation, neglect • Poverty • Poor educational experiences, unemployment, homelessness • Over-representation in the CJS • International studies 7-10% prisoners with ID (Hellenbach et al 2017) compared to 3% in general population (AIHW 2008) • Young people with ID in youth detention 14% (Indig et al 2011) People with cognitive disability in trouble with the law | November 2018

8. What is relationship-based practice? O’Leary et al 2013; Trevithick 2003; Ruch, 2009 People with cognitive disability in trouble with the law | November 2018

9. From band-aid approaches to multi-dimensional understandingMove beyond notions of dependency, solely individual issuesMove beyond purely procedural approach, performance indicators and sole focus on riskGenuine interest in both internal and external worlds of individualsPersonal and structural relationshipsInclude relationships between services and systems People with cognitive disability in trouble with the law| November 2018

10. Community Living Association (CLA) Model • ‘‘The dignity and worth of the individual, self-determinism and self-actualisation cannot be attained unless people have power over their own life decisions’’ (Benn, 1976, p. 80). • Developmental approach • Intentional communities • Identifying common issues • Moving private issues to public issues • Increasing people’s capacity People with cognitive disability in trouble with the law | November 2018

11. People with cognitive disability and the police • The stuff that I want you to put out to the public is that ‘we are people too and that the police need - … to get special training on how to speak to people with disabilities and … to not make it like it’s a riddle of what they have done wrong, because that can scare and stress people with mental conditions and disabilities out… • Stormy J • Lost in Transition: Supporting Young People with Complex Support Needs People with cognitive disability in trouble with the law| November 2018

12. Challenges with police • Communication: • Understanding instruction, nature of questions, legal rights and terminology • Problems with recall • Contact at a point of crisis: • Heightened states, hypersensitivity, police being used for behaviour management • Relationships with authority: • Seeking personal power, aggression, acquiescence, highly visible in their communities, may not disclose impairment • Young People with Cognitive Disabilities and the Police • Lost in Transition Project – Service Providers People with cognitive disability in trouble with the law| November 2018

13. Some strategies • Greater investment in police training, independent third person in interviews • Specialist multijurisdictional police units for working with people with cognitive disability • Brief screening tools – e.g. Learning Disability Screening Questionnaire (Murphy et al 2017) • Key Performance Indicators that specifically promote procedurally just policing of vulnerable groups • BUT need buy-in from police • One disability support worker in a regional area spoke of a female young person with cognitive disability who had told others that her father was interfering with her: ‘When we…talked to the police their attitude was “oh, she just makes up stories”… and wouldn’t do anything about it’ • Young people with cognitive disability and the police People with cognitive disability in trouble with the law | November 2018

14. Relationship-based practice… what if… • ‘‘We work with young people and their significant others...so one person might mean one person or it might mean five people or it might mean 20 people’’ • Worker, Community Living Association • “one thing that we have to do is speak everybody’s language, every system.” • Youth Worker • Lost in Transition Project People with cognitive disability in trouble with the law | November 2018

15. Relationship-based practice… what if… • What if Anakin had been supported to set up his own micro-business or be part of a worker’s cooperative which involved lawn-mowing for the local police station or providing a coffee delivery service or being involved in graffiti removal? People with cognitive disability in trouble with the law | November 2018

16. People with cognitive disability in prison • Wayne: When you first go in there… you get nervous, you shake, cause you don’t know, you haven’t been there before. It seems strange and you look around…. Big walls up there. Think somebody is going to attack you or something like that. You know what I mean? You get bloody frightened. Everybody gets frightened. • Heightened risk of victimisation • Prolonged times in isolation for protection • High incidents of self-harming, self-starvation, suicidal attempts • Frequent strip-searching, wearing of “suicide gowns” • Personal care and hygiene concerns • Exclusion from rehabilitation and work programs • Deteriorating mental health, infrequency of psychiatric intervention • Life stories of ex-prisoners with intellectual disability in Queensland People with cognitive disability in trouble with the law | November 2018

17. Some strategies • Greater scrutiny and safeguards around solitary confinement (Human Rights Watch 2018) • Alternative security measures to strip-searching (Human Rights Law Centre, 2017) • Administering brief screening tools • Greater resourcing of prison and community forensic mental health services (QAMH 2018) • Rehabilitation programs that cater for people with cognitive disabilities • Justice reinvestment and community diversion (Wood 2014; McCausland & Baldry, 2017). People with cognitive disability in trouble with the law | November 2018

18. Angela: Mum and Dad disowned me, didn’t want to know me, so I couldn’t go back to them. And so I had to stay with my baby’s father, Russell. And that was emotional abuse. And everywhere I went to ask for help they were either um no vacancies, or you need referral, or you need to um be on the waiting list. And I tried everywhere for accommodation. Caravan park, motel anywhere and nothing so I had to stay with my baby’s father. And the only place where I felt safe and… be able to cope and that was commit a crime and go back to prison. Life stories of ex-prisoners with intellectual disability in Queensland Relationship-based practice… what if… for correctional staff People with cognitive disability in trouble with the law | November 2018

19. Building knowledge for correctional staff People with cognitive disability in trouble with the law | November 2018

20. Relationship-based practice… what if… vs • Developmental response • We did a bit of an exercise where he described what physically changed when he was getting unwell. ‘‘When I sleep, I sleep with my door open usually. When I’m getting unwell I close the door. I close the door because the voices are shouting at me and I want to shut them out’’. So, that is a physical thing that is very concrete. ‘‘I’ve closed my bedroom door, I need to let D* know I’m not feeling well before it gets to the point I’m smashing things’’. • Worker, Community Living Association • Procedural risk management approach • You’re allowed to get cans of coke and that. But I had to be watched... They had to pour it into my cup and then I have to give the can back... Cause some girls are suicidal. • Kylie in the Crisis Support Unit • Life Stories of Ex-Prisoners with Intellectual Disability in Prison People with cognitive disability in trouble with the law | November 2018

21. Challenges with the NDIS People with cognitive disability and complex support needs are likely to be marginalised Supports don’t easily fit NDIS price guide categories Need for intensive, cross-sectorial case management Better relations between NDIA and custodial providers Investment in skill-set of the sector Respond to thin markets to prevent “off-loading” onto the criminal justice system (Dowse & Dew, 2016; Ellem et al, 2012) People with cognitive disability in trouble with the law| November 2018

22. Relationship-based practice… some thoughts on NDIS planning process • Building decision making • For people with cognitive disability to have a sense of autonomy and self-efficacy – i.e. choice and control – they need workers: • Who are truthful to the person’s real expressions • Who listen deeply and take things slowly • Who are persistent and work through trial and error • Who take time to understand reasons why a person condones or engages in abuse, exploitation, violence • Who avoid colluding in harmful decisions • Who take time to help the person develop a sense of self-control and healthy boundaries So a lot of that translation stuff, saying yes, yes, yes in this really terrifying meeting with all of these strangers and saying yes but then you’re like, “I know in my conversations with you that actually this isn’t what you want but it’s hard to challenge… these kind of people who you meet once every few months and they’re the people who have got the bigger voices than you so saying no is a terrifying thing.” Disability worker Lost in Transition Project People with cognitive disability in trouble with the law | November 2018

23. Anakin • Survived the criminal justice system • Moved into a home where he could live on his own with support • Counselling support for trauma and anger • BUT need for relationship continued People with cognitive disability in trouble with the law | November 2018

24. Staying true to relationship-based values As Zehr (1990, pp 181-182) attests: Crime is a violation of people and relationships…. Crime is not first an offence against society, much less against the state. Crime is first an offence against people, and it is here that we should start. People with cognitive disability in trouble with the law| November 2018

25. Thank you Dr Kathy Ellem | Senior Lecturer School of Nursing, Midwifery and Social Work k.ellem@uq.edu.au 07 3346 9013 facebook.com/uqnmsw Instagram.com/uniofqld Twitter.com/KathyEllem1 www.linkedin.com/in/kathleen-ellem-90977151