Parliamentary Committee Submission
Inquiry into the NDIS Quality and Safeguards Commission
Introduction
is our beautiful 12 y.o. severely autistic son, who faces a mountain of adversity each day. Full of energy, with a cheeky glint in his eye, he enjoys a wonderful, unique sense of humour. spends his days reciting his echolalic phrases, delighting when a trusted carer joins in. He struggles to be in the same space as other children and only accepts certain adults. When anxiety and sensory overload combine, as they do frequently, will communicate his profound distress through biting, grabbing, kicking, hair pulling and devastating self-harm – often banging his head on corners, windows or brick walls. His daily existence is a fragile balance between contentment and pleasure and chaos and utter distress.
In diagnostic terms, has a complex neurodevelopmental presentation of multiple co-morbid conditions including Autistic Spectrum Disorder (ASD) Level 3 in association with a Severe Intellectual Disability (ID), a severe communication disorder, severe sensory processing difficulties and Generalised Anxiety Disorder. also presents with multiple behaviours of concern that have been present since he was a toddler and are frequently resistant to intervention. Despite support from highly skilled staff in all settings, an environment which is fully adapted to meet his needs and attentive, devoted parents and carers, continues to present with behaviours of concern daily. He displays high frequency, high intensity behaviours that present significant risks to himself and others on several days each week.
physical health issues combine with his neurodevelopmental conditions to result in these severe behaviours. experiences intense distress due to digestive pain which escalates when he needs to move his bowels. bowel movements are not regular despite medical interventions to alleviate this. As a result, experiences extended periods of discomfort and pain even over several days, and this is a significant trigger for his behaviour. Despite following medical advice and treatments to address bowel issues and the pain that they cause, all interventions to date have been ineffective.
Over the last 8-10 years we have adapted our lives, re-setting our priorities, limiting our involvement in almost all areas of life to be able to do what we can to care for our precious son, born with such overwhelming and complex support needs. number one goal on his NDIS plan is to continue living with his family for as long as possible and for us all to feel safe. This is an all-consuming challenge. We don’t go on holidays as a family, or join extended family for Christmas, birthdays or other occasions, or partake in so many other typical family activities. What we do is pour our lives into trying to make quality of life better. At times it seems that he lives with daily torment and distress that breaks our hearts and stretches our resolve far beyond what we thought was possible for us.
Key points in submission
NDIS: The support needs of severely autistic participants with complex needs must properly be considered and managed ancillary to general approaches regarding autism. Restrictive practices rules and guidelines need a common-sense approach so as not to reduce freedoms of highly vulnerable people.
Family-centred model: Behaviour Support safeguards need to change to enable more flexible and family centred models to thrive. The current system is set up for institutions and large services and does not accommodate a family-centred model. Onerous registration hurdles and outdated paper-based safeguards appear to force the use of large and unsuitable organisations.
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TOR d) The adequacy and effectiveness of provider registration and worker screening arrangements, including the level of transparency and public access to information regarding the decisions and actions taken by the Commission.
We trust that the Commission will serve well and protect and many others over their lives. Unfortunately, it currently presents bureaucratic red tape and delays, as well as driving a reduction in services and opportunities available to with his complex behaviours. Almost all providers of day care and respite do not offer these services to clients with complex behaviours and this market has become even thinner with the introduction of the restrictive practices rules and guidelines. There are now no day services that we know of in Victoria that will provide care for . The one service that did exist has been rendered impractical since the provider’s response to restrictive practices rules involved removing door locks at the premises. From this point they could no longer cater for needs and behaviours of concern given that they were no longer able to keep him separate from others when dysregulated.
is now on the Complex Needs NDIS stream. Although this stream appears to still be finding its feet, we do trust that this will result in much greater expertise and more transparent and informed decisions. The NDIS needs to continue to invest in developing expertise specifically with severe autism, severe/profound IDs and complex needs and behaviours. The needs of these participants must be considered ancillary to general considerations regarding autism, which in almost all advocacy and policy situations does not adequately include or represent someone like and frequently inadvertently works against his best interests.
Behavioural Support and a Family-centred (or Service for one) model
We and other families in similar circumstances seek flexible options that might work for a family-centred support model to care for our son and give him his best life. This contrasts with a support model based on large service providers which have proven consistently to offer very poor options for someone with complex needs like . With his extraordinary anxieties, building trust with a few highly attuned and trusted communication partners provides with a source of security and is vital to his wellbeing. People who can’t ‘read’ expertly fail very quickly in trying to support him. The Support Workers who can work effectively with are a very small percentage of the market, but there are some who are highly focussed and motivated to work with .
number one goal on his NDIS plan is to continue living with his family for as long as possible and for us all to feel safe. This is a substantial long-term challenge, but one that we believe offers the potential for his best life.
We now have a wonderful “Team ” around and his safety, wellbeing and quality of life have
improved significantly as a result. Working together with his parents, it includes specialised health professionals (Psychiatrist, Psychologist, OT, Paediatrician, etc.) and a small handful of skilled, competent and highly dedicated Support Workers that we have found who love and are committed to the long term to make his life as good as it can be. These people are very hard to find and have the required specialised focus and desire to work with severe cases/complex needs to help families to stay together. Clinical Behavioural Psychologist has prepared a thorough and insightful Behavioural Support Plan (BSP).
Unfortunately, the family-centred model does not readily fit the current Behaviour Support safeguards, where regulated restrictive practices are used. Registration requirements are onerous and appear very
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much suited to large organisations or agencies with substantial administrative structures, including an Authorised Program Officer (APO). Registration has proven virtually impossible to individuals and small businesses, including most of the specialists that wish to work with Most of these are not expert administrators and bureaucrats, nor should they need to be, but they are the most capable, trustworthy and best suited people that we have found to work patiently and skilfully with as he journeys through each day. They support to manage the daily challenges he faces, to enable self-regulation and build resilience, to stay safe, to build life skills and to expand his participation in the community. That is their passion and area of speciality; that is where they make a huge difference to life.
The relevant laws need to change to enable more flexible and family-centred models to thrive and not be thwarted or supports re-directed via much less appropriate services by a mountain of bureaucratic red tape that seems to sit between and those who can provide essential support services. Safeguards are of course essential, but there are certainly more effective and appropriate ways that this could be achieved within a family-centred arrangement for than those in the current requirements.
Registration with the Commission for individuals, such as sole traders and small businesses, needs to change from being onerous and virtually impossible to being simple and more appropriate to the purpose. The purpose may be to provide dedicated and specialised support to a disabled person with complex support needs who lives with their family. It cannot be assumed that the disabled person be in full time care of a service.
The function of APO also needs to be made readily available in a means suitable to a family structure. We are informed that the current Disability Act in Victoria doesn’t allow a family member to be an APO, but rather the APO must be linked to a provider. To have mother as APO would make perfect sense to us and is essentially what happens now. No one else will have the intimate knowledge, ultimate care responsibility and same level of protective instincts for Other good options that we have proposed are his Behavioural Psychologist or another of the health professionals already on ‘Team ’. However, during our interactions to date with the office of the DHHS Senior Practitioner, it has become apparent that there is an assumption that everyone with a BSP will be using large registered service providers with APOs and that the family centred ‘Team ’ model that we are committed to, and are sure it is by far the best approach for , doesn’t fit their way of working. During these interactions with the DHHS Senior Practitioner team, it felt very much like we were in the wrong place and that the APO policies may in fact prove an unnecessary stumbling block that works against best interest.
We need clarity and help navigating this space as parents. complex needs and choices rarely fit into standard boxes in most aspects of life, including how he stays safe and how he expands his community participation. A common-sense approach, allowing pragmatic application of the guidelines is necessary in order to avoid politically-driven over-reaction, with unintended consequences that work against and others with severe autism and comorbidities including severe/profound IDs and presenting with behaviours of concern. When is breaking windows with extreme force of repeated impacts with the back of his head and carers stand back watching, too frightened to intervene due to fear of breaching a restrictive practice rule, clearly best interests are left smashed with the pile of broken toughened glass.
Conclusion
We currently experience well-intentioned but poorly informed implementation of laws and policies that reduce freedoms of vulnerable people like ironically those that they try to protect. It seems clear that the laws need to be refreshed to enable more flexible and family-centred models to thrive.
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