SUB.001.00273_0002
Your Submission
How are you going to share your experiences with us? I am using this form to make a written submission (with or without attachments) Who are you making this submission for? I am providing information on behalf of an organisation or institution How would you like us to use your information? Public What would you like to share with the Royal Commission about your experiences or knowledge of violence, abuse, neglect or exploitation of people with disability? The SMRPCC is an alliance of regional palliative care services in the southern metro region of Melbourne. One of the consortium’s objectives is to provide free education and resources to disability group homes to support them to better understand when to refer to a specialist palliative care service and how to provide a palliative approach to the care of their residents with a terminal illness. This includes training in:
- how to involve people with intellectual disabilities or cognitive impairments in advance care planning
- how to assist the disability service to care for people in their place of choice
- to offer bereavement advice to people in group homes
- how to have difficult end of life conversations. Access to the group homes by the consortium was simple up until 2018, the consortium had a contact list of all group homes in the region which allowed for direct contact to provide new resources, update information regularly and provide secondary consultation or training. Since the management of the group homes has now gone to NDIS providers, we have been unable to obtain an updated list of services in the region. This has led to a “hit and miss “situation for regular contact as we have no way of knowing which providers have services in our region. Palliative care should be available to all people in our region, however, we have identified that there has been a decline in referrals to specialist palliative care services in the region and when contacting large provider organisations which may have services in our region there is a reluctance to use our services. This raises significant concerns about the quality of palliative care provided to residents in disability support homes when facing the end of their lives. It appears that some NDIS providers do not perceive palliative care as an important component of end of life care. Our past experience tells us that it is very important for staff in disability services to be aware of the issues around palliative care in order for people with terminal illnesses to have the same access to health services as people in the community. We believe it is crucial that external providers such as the regional palliative care consortia to be able to access individual disability support services to ensure that palliative care and end of life care for people with disability is available equitably to the rest of the population. Without direct access to the services some providers may be unaware of both the need for and the availability of additional support options. Have you shared these experiences with anyone before? Who did you tell and what happened? I contacted the Department of Health and Human Services in Victoria, who are unable to provide a list of regional services, I contacted the NDIS who can only provide a list of all providers in Australia
Are there any suggestions or recommendations you would like to share, including any examples of what worked well, or ideas for how things could be done better? You might also like to tell us about any people that have supported you.-Contacts of providers should be available on a regional basis, not only through their national organisations, in order to provide equity of access. In a few sentences, what would you like to tell our nation about your hopes for the future? Equal access to health services for all.
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