A central aim of the NDIS is to provide equity of access to disability support. The terrible inequities of the past where access to disability support was based on rationing and queues should be banished. However, does the scheme as so far designed ensure equity of access for all people with disability or only for those people who have the awareness and understanding to seek out the NDIS or have family advocates to support them with this? Many people with disability are not in this position.
Paul grew up in a family home where there was little structure, poor diet and drugs and alcohol were abused. His father was in and out of gaol and violent to Paul and his mother. Paul’s adolescence included suspensions and early exit from school. He is now 18 and moves between his mother’s place and a refuge. He is often charged by the police, typically when minor incidents escalate. Paul does not understand questions and instructions from police officers. He becomes anxious and verbally aggressive. The police become very authoritarian and before long Paul is charged with resist arrest and assault police.
Paul’s solicitor arranges a cognitive assessment and Paul has an intellectual disability with substantially reduced capacity for communication, social interaction, self-care and self-management. The solicitor suggests Paul get support from the NDIS but Paul says, “No way! I don’t want anyone interfering in my life.” Paul rejects the label “disabled”.
Many people with intellectual disability live isolated, chaotic and unsupported lives on society’s fringe. They may lack positive family relationships and basic life skills, live unhealthy lifestyles, be in regular trouble with the police, have trouble maintaining tenancies, be vulnerable to abuse and exploitation, have difficulty parenting children and often have problems with mental health or drugs. Many people on the fringe are Indigenous or from culturally diverse backgrounds. People on the fringe are unlikely to be aware of the NDIS and are often suspicious of government service systems.
Due to the combination of their intellectual disability and deprived life histories, people on the fringe tend not to see a problem with their current lifestyle or have a vision for a better life.
If the NDIS is to achieve equity of access, it needs a strong and skilled outreach and engagement strategy. There are multiple ways in which the NDIS could be alerted to people living on the fringe, for example by health, public housing, criminal justice and child protection services. The NDIS then needs to respond by a skilled and experienced worker first putting in the time to establish a trusting relationship with the person.
The efforts of the Intellectual Disability Rights Service in the Hunter trial site show that a worker with a trusted relationship can successfully support a person living on the fringe to become a participant in the NDIS. IDRS has relationships with many offenders with intellectual disability through its provision of volunteer support people in police interviews and in court. The IDRS Hunter coordinator has built on these relationships to explain the NDIS to clients and support them to become participants. The NSW Council for Intellectual Disability publication Participants or just policed? provides a step-by-step guide to gaining access to the NDIS for a person in contact with the criminal justice system, from detailing strategies for engagement with a person on the fringe through to implementation of participant plans and collaboration with other service systems to meet people’s needs.
Theo is an NDIS worker whose job includes outreach and engagement with people on the fringe. The legal aid solicitor alerts him to Paul. Theo starts off by just dropping in to see Paul and having a chat. After a while, Paul starts telling him about his problem of the week – a lost Medicare card, a phone company is hassling him or what do his bail conditions mean? Theo helps Paul sort out these problems and earns his trust. Then, Theo starts talking about this new scheme called the NDIS that might be worth a try. Eventually, Paul agrees to apply to the NDIS. Theo supports Paul through the NDIS processes and to choose service providers. Paul chooses a service that is experienced in working with people on the fringe. It has workers with skills like Theo’s in building and maintaining a relationship with Paul. There are lots of hiccups but slowly Paul moves towards a more positive and fulfilling lifestyle.
Where is Theo located in the NDIS? There is a range of options for this including through advocacy groups, disability support organisations, local area coordinators and the development of Tier 2, plus robust collaborative relationships with mainstream government agencies.
The continuing design work on the NDIS needs to squarely include putting a strong outreach and engagement system in place. The development of Tier 2 (now called a Framework for Information, Linkages and Capacity Building) needs to squarely address this issue.
This article has focused on people with intellectual disability. Similar issues will arise for many other people including many with psychosocial disabilities or acquired brain injuries.
Read more: Participants or just policed?
Paul and Theo in the case study are not real people. However, the case study is a realistic example of a person on the fringe.