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Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability
Community’s Recovery and Discovery Centre Submission
- Introduction to Communify’s Recovery and Discovery Centre (Written by Lauren Bidstrup - Team
Leader)
Communify is a place-based community services organisation with over 40 years of experience inlistening and responding to the needs and interests of our community members. We are strongly established within our community as a provider of a robust, multi-faceted suite of mental health services that incorporate clinical and non-clinical supports. These services include the provision of NDIS Support Coordination, Recovery Coaching and Core Support, an innovative ‘Safe Space’ alternative to Emergency Department after hours service, a post-suicide attempt support service The Way Back and the Recovery and Discovery Centre.
The Recovery and Discovery Centre is a mental health hub designed to support people living with severe and complex mental health challenges that are having a significant impact on daily wellbeing, health and functioning. Our service operates in the inner-city and west of Brisbane, Queensland and supports approximately 200 participants at any one time through our multi-disciplinary team of Social Workers, Mental Health Nurses and Mental Health Peer Support Workers. The program, funded through the Department of Health via Brisbane North PHN and in operation for 3+ years, delivers four main services
- individual psychosocial support, clinical care coordination, groups and NDIS Readiness support. NDIS Readiness was not included in the initial roll out of the funding but the funding only allows for up to 12 months’ worth of support and many people who were engaged with the program lived with a psychosocial disability that would require life-long support. It very clearly became apparent that specialist support was needed to support applications for the NDIS due to the complex nature of applications for people living with a psychosocial disability. Communify and the other two mental health hubs in the region were successful with advocating for the inclusion of this specialist role and have been inundated since.
While the Recovery and Discovery Centre supports people from all walks of life, the cohort that we support are predominantly experiencing complex psychosocial support needs that have a significant on their ability to support and manage their mental health. This includes challenges with housing, finances, Alcohol and Other Drug use, chronic physical health illnesses, legal issues, child safety and domestic and family violence. In addition to this, the vast majority have very limited natural and professional supports to support them to navigate these systems and experience discrimination and stigma at high rates.
Due to these challenges, engagement with health services remains difficult and many remain on Job Seeker despite living with significant psychosocial disability as the process of applying for the Disability Support Pension requires professional input and high levels of literacy and knowledge of the health system. This traps people in a cycle of poverty and exacerbate the challenges with access to appropriate health services. It also leads to people with a psychosocial disability being at a much higher risk of experiencing violence, abuse, neglect and exploitation.
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- ND/5 Readiness at the Recovery and Discovery Centre (Written by Lauren Bidstrup - Team Leader) The NDIS Readiness Facilitator role supports people whose primary disability is psychosocial to test their eligibility for the NDIS. Referrals are received from Qld Mental Health, Community Organisations, Psychiatrists, GP’s, Psychologist, Family and Carers and self-referrals who all communicate that the process for applying is complex to manage and many have had unsuccessful attempts.
The challenges of applying for the NDIS are monumental and it has been demonstrated that without the support of the NDIS Readiness Facilitator participants would not be successful despite being eligible and in urgent need of these supports. The challenges of the process include having established relationships with health professionals willing to provide evidence of permanency and functionality. People living with a Psychosocial Disability experience higher rates of homelessness, transience, financial disadvantage which lead to not being able to access frequent support through a Psychiatrist, Psychologist or GP. In addition to this, their experiences with severe and complex mental health means making and remembering health appointments, attending these, advocating for their needs and engaging in the process extremely difficult. Once this evidence is gathered, participants then need to have the capacity to plan, book and attend meetings with the NDIS or Local Area Coordinators and navigate implementing their plan. In essence, applying for the NDIS and implementing a plan while living with a psychosocial disability requires a level of capacity and functionality that would make them ineligible - and ironic and deeply problematic issue that is leaving people with a disability lacking vital supports.
The challenges do not cease when participants are successful accessing an NDIS plan. At the Recovery and Discovery Centre, we see how difficult people find the transition from a block funded support service to a very inflexible system that does not meet their fluctuating mental health needs. The general guidance that is provided by the NDIS and Local Area Coordinators is inadequate when the NDIS promotes individualized plans that can be difficult for people to understand and implement. Increasingly, access to adequate Support Coordination or Recovery Coaching hours that would allow people with a psychosocial disability to navigate the systemic barriers they face are not being reflected in plans. Support Coordination hours continue to be pared back and the assumption in the scheme that once supports are in place support coordination will be reduced does not apply to many people with Psychosocial Disabilities. Support Coordination hours are often used up when people go into crisis even when state based health services are involved in support. The issues mentioned above that people with a disability experience at higher rates than the general population (housing, finances, Alcohol and Other Drug use, chronic physical health illnesses, legal issues, child safety and domestic and family violence) do not go away with the implementation of an NDIS plan but the ability to access many federal and state block funding services do.
The Recovery and Discovery Centre receive calls every day from professionals, family, carers and individuals who are either struggling to meet access, finding it difficult to implement their plan or have a current plan that is not meeting their needs. Our service has one part-time professional who is able to support and this is only possible due to advocacy and flexibility from our local funding body. We hear stories every day that prove the NDIS was never designed to support people living with a Psychosocial Disability and that there is still not a system in place in Australia to provide the support people need to live a full and meaningful life free of violence, abuse, neglect and exploitation.
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Case Studies (Written by Jade Thorburn-Weise, NDIS Readiness Facilitator) In the process of writing this submission, our team at the Recovery and Discovery Centre reflected on the stories that had been shared with us in our daily work with people living with psychosocial disabilities. Stories of the abuses that people living with disabilities have endured - frequently at the hands of those responsible for ensuring their welfare - the constant, exhausting battles that individuals and their families face both in trying to have these abuses acknowledged and to access the help they need to survive, the frustration and determination. What I found most horrifying as a practitioner was
that I have too many stories to share; I could go on and on sharing stories of people I’ve worked with
and they would all feature similar themes. I would be hard pressed to recall a person that I have
encountered in a professional setting who would not have a story to share with you, the Commission, about their experiences of violence, abuse, neglect and exploitation. I am somewhat fortunate to have grown up in an era where there have been shifts in our perception and treatment of people living with disabilities, in many ways for the better. I have witnessed the National Disability Insurance Scheme allow for more visibility and inclusion in our communities of people with disabilities. My fear though is the stories of abuses, invalidation of people’s experiences, gaps in systems and the battles that people and their families fight with this new system; that the wheel has been reinvented with the same inevitable and tragic outcomes.
PLEASE NOTE ALL NAMES HAVE BEEN CHANGED
Annie’s Story
Annie is a female who was born with a cluster of birth defects which
impacts a number of body systems and functions including vertebral defects, anal atresia, cardiac
defects, renal anomalies, Annie comes from a loving home; an only child with a ■■■■■■■■I.
supportive Mother and Father. By the time she was 21, Annie had endured over 100 painful and invasive surgeries in order to improve the functionality of these impacted body systems. Annie continues to require care from an extensive team of medical professionals and is at•••• hospital on a weekly basis. Despite these interventions, Annie is still impacted in her day-to-day life for example Annie requires Assistive Technology in order to empty her bowels on a daily basis. Annie’s mother stepped back from her work in the family business in order to care for her daughter full time and be there for her during each lengthy recovery period. Between them, Annie and her Mum slowly began to learn the language medical professionals used to talk to them. This was helpful in many ways as Annie had previously left interactions with medical professionals having no idea what was said to her; how successful a surgery had been, what procedure she would have to undergo next and what the outcome meant for how her life looked. There were numerous times when Annie’s new found ability to understand, and question, what was happening to her own body was met with derision; Annie speaks of one specialist who refused to continue to provide treatment when Annie questioned his recommendation for further surgeries. Another time when communicating that she understood what a professional had said she was quite literally patted on the head and told she was a ‘smart little girl’. I began working with Annie following a diagnosis of Post-Traumatic Stress Disorder, directly related to the invasive procedures and treatment that she had endured at the hands of medical professionals. Annie began working with a psychologist after she began to experience physical symptoms of distress and panic attacks when having to enter a hospital for vital ongoing treatment. Annie describes a complete
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lack of bodily autonomy and respect in a hospital setting, repeating to herself each time she was being examined, ‘This isn’t happening to me, it’s just my body; this isn’t happening to me, it’s just my body’. At the time of our first meeting, Annie had a Master’s degree, had been rejected from the National Disability Insurance Scheme three times and was currently living with her Mother and Father in their office spaces following the loss of their family home. The worst part of not having a home for Annie? Being unable to access a shower when she was unable to control her bowels and recurring Urinary Tract Infections from a lack of sanitary spaces to take care of her personal hygiene. Using their own resources and determination, the family are now back in stable housing. After accessing support to gain access to the National Disability Insurance Scheme, it was determined that Annie was eligible for upwards of $190 000 of funding per year.
Debbie’s Story
Debbie is a female who lives with Schizophrenia, Borderline Personality Disorder and intellectual impairment. I first met Debbie during the roll out of the National Disability Insurance Scheme in the region. Debbie became involved with the organisation I was employed with for a long respite stay following an incident at her supported accommodation provider and burn out from her carers. Debbie came to stay with the organisation I was employed with in short term accommodation as she was no longer able to remain in the supported accommodation facility following . This incident was reported to the manager of the provider and eventually to the NDIS Commission; to my knowledge, this supported accommodation provider
continues to deliver services to the under the NDIS. Prior to entering the supported ■■■communityaccommodation provider, Debbie was living with her Mother and Father. Debbie's parents were aging
and also lived with intellectual disabilities. Debbie struggled with fecal incontinence and during our first visit to Debbie’s home, we were shown to her living space - a-shed in the family’s backyard and plastic covering the bed. This was the solution that the family had come up with to deal with the incontinence and moved Debbie to the supported accommodation facility as they could no longer provider her with the level of care that she required; Debbie has been largely unable to care for herself since she was a young person needing help to shower each day, dress herself, cook her meals. Again, the first time Debbie applied for the NDIS she was rejected. A second application was submitted with the assistance of an organisation and Debbie was providing with a package of over $200 000 for a 1 year period. Debbie eventually received funding for Specialist Disability Accommodation; this was an overwhelmingly positive thing for Debbie, vastly improving her relationship with her family and at one point breaking down in tears when she was able to move ‘trinkets’ such as a jewellery box, framed pictures and figurines into her home for the first time as a middle aged woman. Each year since, Debbie and her support team have had to fight to retain the NDIS funds that allowed Debbie to no longer live in a shed or with a provider who shamed and humiliated her.
Bradley’s Story
Bradley is a man living with Dissociative Identity Disorder. He linked with Communify twp years ago while living on the streets . After spending much of his life in and out of temporary and short term housing options, Bradley spent many years on the streets, preferring this to the frequently chaotic and unsafe accommodation in boarding houses, making it close to impossible to manage his mental health symptoms in those environments. Throughout his life, including periods of homelessness, Bradley was able to remain linked in with a long term psychiatrist and GP throughout his
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experience of being a homeless person. Once obtaining a stable unit, I began the process of assisting Bradley to apply for the NDIS. At the point of completing a Verbal Access Request, we were informed the Bradley was already an NDIS participant and was on his third NDIS plan. He was, in fact, a defined participant and Bradley was entirely unaware of this fact. When asked how each new NDIS plan had been developed without Bradley’s knowledge, consent or participation we were informed that his first plan had simply rolled over as the NDIS hadn’t been able to contact him. The NDIS representative stated that, ‘it doesn’t matter how we got here’. These are invaluable supports that a vulnerable and isolated member of our community was unable to access for a number of years as well as funding that had been allocated and underutilised. Given the correlation between psychosocial disability and homelessness and a housing crisis - I can’t help but wonder how many NDIS plans continue to be rolled over, unused by people who are eligible for the supports and contributing to budget blow outs. It also raises the question of duty of care and neglect, when a plan was able to rolled over three times without making contact with the participant.