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North East Citizen Advocacy: Group submission on the impacts of COVID-19
Introduction
North East Citizen Advocacy (NECA) is a community based not-for-profit advocacy program based in northern metropolitan Melbourne. We hold a vision of a community in which every person’s life has inherent dignity and value, and this vision has informed our work as a disability advocacy organisation for over 30 years, especially in relation to our Citizen Advocacy program.
Citizen Advocacy is a model that builds on the principles of Social Role Valorisation
(Wolfensberger & Thomas, 2005), and seeks to promote an inclusive community by building long lasting relationships between ordinary citizens (citizen advocates) and people with disabilities (participants). Advocates can come from a variety of backgrounds and no prior experience working with people with disability is required. Advocates are provided with training and ongoing support by professional staff. The absence of a formal client-worker relationship allows for an authentic partnership to develop over time between the advocate and participant based on trust and mutual benefit.
In February 2022, NECA held a forum in Melbourne to explore the experiences of people with disability during the Covid-19 pandemic. We heard from both citizen advocates and people with a disability. Following the forum, we consulted further with community members to gain insight into how the pandemic has impacted people with a disability and find out what could be done differently moving forward. This paper shares their stories.
We have used pseudonyms throughout the paper to protect confidentiality.
Setting the scene
Since the beginning of the Covid-19 Pandemic in late March 2020, the greater Melbourne Metropolitan region has been subject to a series of lockdowns and strict safety measures put in place by the Victorian government. The first of Melbourne’s lockdowns lasted 43 days and the second lockdown lasted 111 days. The following four lockdowns ranged from 5 to 96 days in length and were often announced with minimal warning and became known as “snap” lockdowns. The conditions of each lockdown varied but were commonly characterised by restrictions on visitors to the home, limitations on how many people could meet in public, required 1.Sm physical distance from other people, and the closure of non-essential services.
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The pandemic produced a temporary world of uncertainty and inconsistency, which for many people with a disability presented all-new barriers to accessing support and maintaining a good quality of life, while also exacerbating difficulties that were already present in their lives due to the frequency and length of the lockdowns and safety restrictions. These included (but
are not limited to) timely access to appropriate and specialised healthcare, social
isolation/exclusion from participation in society, barriers to accessing the COVID-19 vaccine, and a lack of available support workers through disability service providers.
COVI D-19 and social isolation
Malika is a citizen advocate who shared the experience of the person they support, Janine,
during COVID-19 stay-at-home restrictions in Melbourne. Janine lives in supported
accommodation and has an intellectual disability and a physical disability that impacts their lung capacity and joint mobility. Malika shared that one of the most challenging aspects of the pandemic for Janine has been social isolation and the direct physical impact that the requirement to stay at home and isolate has had on their wellbeing.
Janine’s underlying health conditions meant they needed to put extra precautions in place to avoid contracting COVID-19 even after restrictions had eased, such as continuing to stay at home and only leaving the house for short periods chime when necessary. Janine is naturally a very social person and really enjoys regular catchups with friends and being present in their community. Not being able to socialise in their preferred way (e.g. visiting a cafe with a friend) has reduced their motivation to leave the house, thus greatly reducing opportunities for physical exercise. Without regular movement, Janine’s physical endurance, aerobic fitness, and joint mobility has severely deteriorated.
Malika stated that the social isolation caused by the pandemic has led Janine to feel
“frustrated, sad, and disappointed” and had an overall negative impact on both her emotional and physical wellbeing. Malika also expressed concern that Janine’s health and mobility may never return to the levels they were before the pandemic and highlighted the need for ongoing supports long after the pandemic has ended.
Eric was another citizen advocate who attended the forum and shared a similar experience about the person they support, Jidah, who has also found the social isolation as the most
challenging aspect of the pandemic. Eric described Jidah as "having gone downhill"
emotionally since the pandemic, with limited opportunities to leave the house and socialise.
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Recommendations:
A recommendation was made for additional access to ongoing physical supports to assist with deteriorated mobility and other health concerns to address the lasting impacts of COVID-19, as well as supports to access avenues for social participation.
A recommendation was made for mental health supports to be funded and prioritised for people with disability.
COVID-19 and supported accommodation
The experience of living in supported accommodation for people with a disability during the pandemic varied widely depending on their service provider. One citizen advocate provided positive feedback about a service provider that was pro-active in developing a covid-safe visitor system in the accommodation. The willingness of this provider to ensure a safe way for residents to continue to receive visitors allowed for an essential means of continuing social connectedness and increasing emotional wellbeing. This was particularly beneficial during a time when risk of isolation was high.
Another citizen advocate highlighted that a successful continuity of care was established by the service provider they are engaged with, and this acted as strong safeguard for potential neglect and contributed to a greater quality of life for the person they support. At this service, the employees worked hard to ensure there were no gaps in support through consistent and pro-active communication. A similar sentiment was echoed by another citizen advocate, who discussed the experience of Ruby, the person who they support, and stated that “a high percentage of the staff in her house are permanent and they know Ruby, and what her needs are and I feel they are generally very supportive of her.” When Ruby had injuries, or medical concerns, the staff contacted the citizen advocate as well as relevant health professionals to ensure continuity of care.
Unfortunately, this was not the experience for everyone. During the pandemic many group homes did not allow in-person visitation, and it was reported that some workers were not showing up for their scheduled shifts during the pandemic.
Yuki shared their story with us regarding their experiences of their accommodation support provider during the pandemic. Yuki has a supported, independent living arrangement and they require the use of a hoist and the support of a carer to get in and out of bed. Yuki told us about an instance where they were left in bed for 37 hours, because the carer was not trained in using a hoist. Eventually when a carer arrived the next morning, they were extremely dehydrated and lying in their own bowel movements. Yuki reported that during
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the pandemic there had been multiple instances of no one showing up to assist them with their meals, administer medication, or feed their cat.
Yuki further told us that during one of the outbreaks in Melbourne all but one worker was pulled out of their shifts due to potential COVID-19 risk, leaving them with large gaps in their support. Yuki themself got tested, received a negative result, but was not offered any further supports. Additionally, they had to fight to be tested in a timely fashion, as their service provider offered no additional support with this process. Yuki also shared that a worker visited them during the omicron outbreak and pulled their mask down to speak with them. This left Yuki feeling as though they were being treated with less care than others and placed at risk of contracting COVID-19.
These instances of neglect and failure to provide continuity of care are in part due to poor communication between parties within the care team. A carer, Haley, who works with Yuki regularly, is often trying to get in contact with management at the disability service provider and is continually unable to reach them. There are insufficient measures in place to ensure clear handover and ongoing communication between workers. There is high turnover, and Yuki often finds themselves faced with a new worker who they don’t have an established,
trusting relationship with, and often this worker is also inadequately trained and not
confident to provide them with the level of care they require.
These experiences have been deeply distressing for Yuki and resulted in several circumstances that not only removed their dignity and autonomy, but also placed them at risk of direct
physical harm. They expressed that they feel like their care is "just another way for the
provider to make money.“
Recommendations:
A recommendation was made that a service delivery model focusing on trust, rigorous communication, and autonomy for the person with disability should be prioritised by service providers. A standard of timely and thorough communication between service users and
services providers should be adhered to as a best practice model. This needs to be
operationalised through practice and policy, e.g., an organisation has a practice standard of 24 hour turn around when responding to concerns, requests, or complaints from a service user.
A recommendation was made that disability support workers need to be paid, supported, and trained more, so that they feel incentivised and properly equipped to show up and do their work.
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Additional recommendations put forth by NECA:
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that an authority should be notified as per incident reporting requirements and organisations must have a contingency plan in place when there are no trained staff to attend to client needs e.g., operate hoist
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that residents of group homes should not be denied access to visits from informal supports and advocates
COVI D-19 safety and in-home care
Anna shared their own experience during the pandemic of support workers using inadequate Personal Protective Equipment (PPE). Anna lives alone in a rental, and has workers visit them to assist with essential care in the morning and evening and occasional supports throughout the day. One worker tested positive for Covid-19 and was infectious during the time that they had been providing essential care to Anna. Anna got tested and thankfully returned a negative result, however the supervisor from the service provider was contacted but they denied that the infectious worker had contracted COVID-19. During this time the service provider was required to report to the Quality and Safeguards Commission whenever a worker tested positive whilst working, but it was reported to us that this did not happen in this instance.
Anna was also very concerned when their support workers were showing up to shifts without adequate PPE, putting it on only after they had entered Anna’s house. When they did use PPE, they were only wearing surgical masks, no gloves or face shields. When Anna asked their support workers to wear more thorough PPE, the staff refused this. Management supported this decision under the proviso that the person they were supporting wasn’t deemed a covid risk to the workers. Anna expressed that they felt very uncomfortable with this, because although their own risk to the workers was indeed low, the workers themselves pose a direct risk to Anna without wearing the appropriate PPE. The service provider prioritised the comfort of the workers over the safety of Anna, who is at higher risk of serious illness in the event of a COVID-19 infection.
This case was referred by an advocate to 1111 to which they received no response. The advocate also contacted the NDIS Quality and
Safeguards Commission, to which they responded that if the person is unhappy with the
service being provided, they can simply change providers. The commission also stated that
this issue is the responsibility of state government and is not in their direct jurisdiction to
intervene. This stance normalises the perpetuation of neglectful practice, but also does not consider the complex and often very challenging process of changing NDIS providers.
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Recommendations:
The recommendation made based on this person’s experience is that if someone is receiving in-home essential care, their home must be treated like a clinical setting, as far as infection management is concerned. The approach to ensuring appropriate use of PPE and social distancing where possible must be led by the person who’s home the service is occurring within.
Additionally, if the Quality and Safeguards Commission do not consider a matter of alleged neglect within supported accommodation to be in their jurisdiction, then the question is raised as to what the purpose of their role is. A clear framework of reporting quality issues
should be in place with consistency across the states. Pathways to reporting must be
accessible to people with disabilities.
Accessing supports in the healthcare system
Mahira, a citizen advocate shared the experience of Annabelle and the challenges they faced receiving support whilst navigating the healthcare system. Annabelle is non-verbal and benefits from having a support person present in a healthcare setting to assist them to communicate their needs. Annabelle was admitted to the hospital due to management of ongoing health issues during one of Melbourne’s lockdowns and their support worker was not allowed to remain with them in the hospital to support Annabelle’s needs or ensure adequate handover was provided to the healthcare workers at the hospital. This barrier was created by policy from both the hospital and Annabelle’s service provider. The hospital were not allowing support workers due to the COVID-19 restrictions and Annabelle’s service provider do not provide residents with a support worker once they have been admitted to hospital as it is not covered by NDIS funding. Due to this Annabelle had to sit alone and wait with no way of communicating to hospital staff. At no stage during her hospital admission was Annabelle assigned a social worker from within the hospital to support her.
Mahira then contacted the hospital and spoke to a social worker who agreed that Annabelle
should have been assigned a social worker during her stay as a minimum support
requirement, and that they would put a note on Annabelle’s file stating that a worker should be assigned next time they are admitted to the hospital. Mahira stated that it is important for Annabelle “to see a familiar face to ensure they are settled” in the hospital setting. Annabelle was then admitted to the same hospital a second time during lockdown and was once again not assigned a social worker or support person during their hospital admission. When Mahira questioned the hospital staff again about not assigning a social worker or allowing a support person, they reported they knew nothing about this and nothing was on the file.
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Recommendations:
A recommendation was made that internal hospital procedures for people who have high support needs should be more rigorous and consistent. A social worker should be assigned to someone with communication needs upon admittance, and the social worker should be in consistent communication with the patient and any relevant service provider or support person.
Additional recommendations put forth by NECA:
- in times such as a pandemic an exemption to the rules pertaining to no visitation during lockdown must be considered for people with cognitive impairment,
communication issues and high support needs.
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hospital staff should be trained in a best practice disability framework for healthcare providers
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disability service providers should have funding to provide residents with a support worker while they are an in-patient
Conclusion
From the stories shared with us we have interpreted consistent themes around the
experience of social isolation, the importance of clear and timely communication between services users and providers, the impact of either the presence or lack thereof a person centred, human-rights approach to service provision, and problematic jurisdiction issues between state and federal bodies.
Some people we spoke to had positive experiences to report, particularly in relation to service providers and staff who put in the work to maintain social connectedness and COVID-19 safety responses. However, we also heard stories of neglect and disregard for the autonomy and safety of people with a disability. This highlights that there is no consistent approach or framework that is used across the disability sector to ensure that quality service provision is provided. Jeremy, a citizen advocate who attended the forum, summarised this succinctly when they shared their frustration and disappointment in the government’s inability to proactively support and safeguard people with disabilities during the pandemic. They stated that “these people are amongst the most vulnerable in our community - they’re struggling emotionally and financially. They’ve been left behind”.
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i North East Citizen Advocacy
Community Advocacy and Connections Since 1986
Reference
Wolfensberger, W., & Thomas, S. (2005). Introductory Social Role Valorization workshop training package. Syracuse, NY: Training Institute for Human Service Planning, Leadership and Change Agentry (Syracuse University).