INQUIRY SUPPORTED INDEPENDENT LIVING
I am a sibling of a PWD, with multiple disabilities. who resides in SIL accommodation, accesses the community with 1:1 support and attends a day program 1 1/2 days a week. I am a joint Plan Nominee for my brother as a participant in the NDIS, advocate for his rights, carer when needed and a sister. I have had to reduce my working capacity by a third, in the past two years, to fulfil these functions. Supporting a PWD within the NDIS is arduous for someone who has no experience with bureaucracy, stressful, not transparent, complex and very time consuming. How can a Participant with complex needs navigate the process without support? Large SIL Providers may have in house legal support. An imbalance in knowledge and power exists.
I offer the following from our ( PWD plus supporters ) experiences thus far.
There needs to be a separation of delivery of services from Service Providers to avoid conflict of interest. Plan management needs to be separate from support coordination, from provision of SIL supports. For PWD who are clients of a SIL Provider, who have no family/ advocate to act as a Plan Nominee, this role should NOT be filled by the same Service Provider. This is a conflict of interest that leaves the PWD vulnerable to neglect and abuse. This needs to be externally monitored for those PWD who have no family / informal supports to assist PWD to make an informed decision regarding choice and control. In the instance of my brother, when he first became a client of his SIL Provider, the Provider WAS THE PROVIDER OF SIL ACCOMMODATION, DAY PROGRAM AND SUPPORT COORDINATION. The first Support Coordinator whispered to us at our first meeting, whilst glancing to the outer office, ‘I’m actually supposed to make you aware of other options.’ This alerted us that a conflict of interest may have existed. Without our consent or knowledge, that Support Coordinator was replaced by another, who happened to be a Disability Manager for my brother. We found out only by trying to contact the first person for assistance. So then my brother had a Support Coordinator, who was employed by the SIL Provider, who performed 2 roles for my brother: Support Coordinator and Disability Manager. This was a conflict of interest. We now have a Support Coordinator for my brother who is independent to the SIL Provider. This is an improvement by 1000% as they provide independent advice and we can freely communicate our concerns/ queries about the Provider without fear of reprisal for my brother. We had to work this out through the experience. We were not given guidance on this issue by the NDIA. If the NDIA were to provide guidelines to PWD and their family/ advocates/ supports as they entered the scheme to alert them to the different roles, what to expect and what the rights of the PWD were the above scenario could have been avoided. If the NDIA required that all roles be provided independently of each other, or at the very least be provided with transparency and strict oversight, the above scenario could have been avoided.
There needs to be comprehensive information easily available for SIL clients and their families/advocates as to their rights and options when dealing with SIL Service Providers and where to go for assistance. I could not find such a resource searching online or by contacting several Advocacy groups. Conversely, there appears to be multiple resources and workshops available for Service Providers in how to make the NDIS work for them.
SIL Providers need to be educated re the choice and control of the PWD in their care. NDIA needs to enshrine clearer expectations for Service Providers.
I have made 2 complaints to the Quality and Safety Commission regarding the rights of my brother:
- In 2018 the SIL Provider discontinued full access to the internet for my brother, despite this being a stated part of his board. My brother is blind ( moderately to severely hearing impaired, Autistic and moderately intellectually disabled ) and without the internet his Google Home did not function. Following multiple communications with the SIL Provider we had to escalate to the Quality and Safeguards Commission before internet was reinstated for him. My brother experienced continued distress through this process, unnecessarily, that took several months.
- Over the June long weekend 2019 the SIL Provider instituted a 3 day ‘lock down’ across all it’s 30 plus SIL homes, despite only 4-5 clients in a couple of homes having diagnosed Influenza. I contacted the Public Health Unit and 3 different Medical Practitioners. All advised that only persons with diagnosed Influenza needed to be kept home. To institute a managerial instruction to ‘keep all clients in house’ over the long weekend without consulting the clients or their families/advocates as to their individual desires disregards their rights. It is concerning to me, that when we met with a manager who, jointly, made the decision he said he would make the same decision again.The Quality and Safeguards Commission have closed the complaint with a tier 1 educational response with the Provider. I have requested the SIL Provider produce a Policy and Procedure document so that this situation is not repeated.
My brother has nominated 3 preferred support workers. We have had to repeatedly advocate, via email, in meetings and the formation a Communication Plan for him to receive support from these
- His complex mix of disabilities means he must be able to trust his support workers to be able to effectively communicate with consistency and be able to keep him physically safe when he accesses the Community. If he has a negative experience with an activity, it can take years for him to attempt it again. My brother, with his family, should be able to supply the information and the SIL Provider act on his wishes. We should not have to lobby, advocate and escalate to achieve his right to choose who works with him.
Staff in SIL homes need to be comprehensively trained. PWD with complex and multiple disabilities are the demographic utilising SIL accommodation. Inexperienced staff with insufficient training put PWD lives at risk.
There needs to be transparency around the calculation of the SIL Quote and that information needs to be available to the PWD and their families/ advocates. The Service Agreement that the SIL Provider gave us to sign in 2018 did not have a Schedule of Services attached. Without that, we did not know that my brother was supposed to be receiving 19 hours of 1:1 support. The SIL Provider was providing 2 hours, yet claiming for the 19. I reported the SIL Provider to the Fraud Unit of NDIA for this and my brother started to receive his full hours.
Support workers in SIL services require increased training and therefore should be paid at a higher rate. PWD that require SIL accommodation, generally, have higher, complex or multiple disabilities. To ensure PWD receive high quality care support workers should be trained sufficiently to provide it.
PWD in SIL accommodation often don’t have family/ informal supports to advocate for them or monitor the quality of their care. The NDIA needs to provide a dedicated advocate for each SIL client who has no-one else. PWD in SIL would, more likely, not be able to know their rights, their options, how to speak up for themselves etc. When we were advocating for my brother regarding the lack of supply of 1:1 hours, we were told by staff that the same situation applied to other clients, yet those clients had no-one to advocate for them. This leaves those clients open to being taken advantage of and neglect.
Is it possible for the NDIA to broker a contents/ personal belongings insurance scheme for PWD living in SIL accommodation? PWD living in SIL may have expensive items of AT and to be required for each PWD in a group living arrangement to take out a contents insurance policy is not financially viable for them, as Insurance companies have a minimum premium policy. This is not affordable for most. In addition, the nature of SIL allowing multiple persons access to a group home may void a standard policy in any case.
The NDIA has a duty of care to ensure there is always a SDA/SIL Provider option for PWD with high or complex needs, particularly in rural/ regional areas. The most vulnerable in our community should not be left at the mercy of market forces. At the very least, there needs to be high levels of oversight, particularly if there is only one suitable Service Provider in a region.
Thank you for your consideration of the above,