I thought that after forty-five years working in the intellectual disability sector

that I had seen everything but last week at the South Australian Civil and Administrative Tribunal (SACAT), I saw a new low in how we support people with disabilities and their families.

Phillip, a 29 year old man with autism and intellectual disability is an NDIS participant and has always lived with his mother, Evelyn. When he was very young, his mother and father were divorced after serious domestic abuse and, in the ensuing custody dispute, Evelyn was awarded sole guardianship of Phillip. His father was denied any visitation rights because the judge feared that he would find ways, during any visits with Phillip, to punish Evelyn. Since then Evelyn has devoted herself to Phillip’s wellbeing. In this, she has effectively put her own life and interests on hold to ensure as good a life as possible for him. A close family supports them, including during emergencies that arise from Phillip’s behaviour, including a brother-in-law coming to their home, supporting Evelyn and soothing Phillip.

For many years, Evelyn cared for Phillip without support as was the case for many families in similar circumstances. With the flow of funding through the National Disability Insurance Scheme, two disability organisations now provide a range of transport, respite and day services to Phillip. Staff from these two organisations have had access to the family home. Evelyn has invited them into her home and treated them with respect and hospitality.

Again, like many other families in similar circumstances, Evelyn put in place some arrangements to deal with Phillip’s occasional outbursts of violent behaviour which often led to violent physical attacks. Her strategy included locking him in his room and administering medication, which had been prescribed by Phillip’s psychiatrist and GP. These strategies we now regard as “restrictive practices.” In the cash-strapped pre-NDIS days this was commonplace and everyone in the system from disability ministers down, including myself, were complicit in allowing this to occur. Citing “lack of funding”, we essentially turned a blind eye, often letting the Evelyns of South Australia muddle by.

Following an anonymous report from one of the staff visiting the home about these strategies, a succession of events evolved that saw Evelyn receive a letter informing her of the hearing of SACAT, essentially to consider issues of guardianship, including an administration order to manage his finances and special powers to deal with the “restrictive practices” Evelyn was using.

There were significant errors in the information supporting the application including that there was no supporting family, that Phillip was locked in his room overnight and that his bedroom contained only a bed. The facts were that there were family members actively involved- two sisters and their husbands attended the hearing. Locking him in his bedroom is never used for more than an hour, with Evelyn sitting by the door soothing Phillip, sometimes supported by a family member. At the hearing, photos of his well-furnished bedroom were entered into evidence.

I am greatly concerned that a woman struggling to do her best for a son she loves and to whom she has effectively devoted her life, totally unaware of such issues as “special powers”, “administration orders”, “restrictive practices” and even the existence of SACAT, has effectively been ambushed by events leading to the hearing.

It was quite right for the person to make their report and to choose to be anonymous. My concern is with what happened after that. I see no evidence that there has been any attempt by anyone to work with Dorothy to assist her to correct these issues.

What Evelyn and Phillip needed was some old-fashioned case management now not available to NDIS participants. It is not just support coordination which can be funded by the NDIS; it is much more complex than that. It involves helping people not only navigate the service system, but also helping them understand the family dynamics at play and the requirements of our guardianship and protection laws. A guardianship hearing should only have been contemplated if Evelyn was recalcitrant and unwilling to meet the new requirements.

The way that this has been done has created a further problem. Evelyn perceives that staff from one of the organisations have effectively betrayed her trust and she now wants nothing more to do with them, ironically at a time when she needs them most. She is in a highly anxious state, believing that workers have colluded to “take her boy away from her.” She believes the referral to SACAT was orchestrated with this result in mind.

When the presiding member made an interim order to appoint the Public Advocate, she and her “non-existent” family were distraught beyond description. I know that the Public Advocate and her team deal with these

issues with compassion and a preference for preserving family involvement wherever possible, but to Evelyn it is another unknown entity.

At the risk of harking back to the old days, if this situation had occurred when I was the CEO of the Intellectual Disability Services Council, a skilled and senior case manager with a background in social work, psychology or developmental education and expertise in family dynamics would have been appointed to work through this with a family to find a solution. I always felt taking unresolved cases to SACAT was a sign of failure. It produces winners and losers and the terrible angst I witnessed at that traumatic hearing.

A case manager working with a family like Evelyn and Phillip might assist them to come to a range of solutions. Sometimes the “Evelyns” of this world are not always doing the best for their son or daughter, often not even realising that fact as they muddle through as best they can. The solutions might include finding the supports to assist Evelyn to care for Phillip without the need to use restrictive practices. Sometimes it might be to get Evelyn to understand that the time had come when there might be better options for Phillip. With skilled case management support, these parents can be supported to understand that they have done their best and that it is now time to find other options, feeling pride for what they have achieved rather than the all-pervading guilt that often surrounds these decisions.

For Evelyn’s 29 years of dedicated care to be seemingly dismissed at a hearing where no one knows her and her son and their story is, quite frankly, disgusting.

When I rang Evelyn the next day to check on her well-being, she told me she already been in touch with the bank to set up arrangements to provide accountability and transparency for the management of his money and that, at that very time, the tradesman she had rung earlier was at the house taking the bolt from the bedroom door!