Barriers and enablers in developing a COVID-19 policy response for people with disability - what can we learn?
As multiple states head back into lockdowns and restrictions due to new COVID-19 outbreaks around the nation, focus is once again on the Federal Government’s policy response to the pandemic. As we have seen with outbreaks in aged and disability care settings, policy responses must take into account groups who may be more at risk from COVID-19. At the start of the pandemic people with disability were largely ignored in the Federal Government’s intial COVID-19 policy response. Consequently the disability sector rapidly mobilised to lobby for a disability specific response. In today’s blog piece Celia Green discusses a new report that examines what helped and hindered the development of a COVID-19 policy response for people with disability and what we can learn from this for future crisis and emergency situations.
Early in the COVID-19 pandemic, Australians with disability were identified as a vulnerable population due to increased risk of morbidity and mortality as a result of underlying health conditions, potential exposures to multiple support workers and informal carers, and ‘social determinants of health’ impacts such as discrimination and social exclusion. Despite this, people with disability were largely ignored in the Federal Government’s initial COVID-19 policy response. Consequently, the disability sector rapidly mobilised to lobby for the Federal Government to create a disability specific policy response, which resulted in the Commonwealth Department of Health forming an Advisory Group and associated Roundtable to help inform the development of a response.
In our new report from the Centre of Research Excellence in Disability and Health we explore the barriers and enablers that led to the development of the Management and Operational Plan for People with Disability the Federal Government’s National Action Plan for protecting people with disability during the pandemic. We interviewed 18 key stakeholders who were part of the development of the Action Plan to find out what they thought helped or hindered the process of developing a COVID-19 policy response for people with disability.
Despite an initial lack of action to protect people with disability by the Federal Government, there were a number of enablers that helped both draw policy makers attention to the issue and facilitated a relatively rapid policy response once policy makers were on board.
Policy enablers
Networks and collaboration
> Established long-standing relationships and networks between disability stakeholders and government actors were instrumental in garnering government attention on the need for a COVID-19 disability policy response.
Window of opportunity
> A number of events occurring in a short time period had focused government attention somewhat on the health and well-being of people with disability. These included the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, Deaths in Care reports, and Human Rights Act in Queensland. More broadly the roll out of the National Disability Insurance Scheme meant decision makers were more aware of the needs of people with disability. These events facilitated a window of opportunity for stakeholders in the disability sector to be able to better gain the attention of policy makers on the need for a specific approach to develop COVID-19 policies to address the risks for people with disability.
Evidence use
> Qualitative evidence (including personal stories) was used by policy makers who were more willing to base policy decisions on this type of evidence during the pandemic than what participants in this study reported as their usual experience in disability policy making. It seems that the uptake of personal stories was due in part to lack of an evidence base around COVID-19, but also because there was a significant lack of disability data available to inform decision making (which is a longstanding issue in Australia).
>The role of experts was also highly regarded by policy makers who were committed to being guided by “the science” to an extent that is not displayed in all policy areas.
Individual leadership
The leadership, internal advocacy, and personality style of a senior public servant leading the response was seen as an important enabler, creating an inclusive atmosphere to policy discussions and permitting a fast and co-ordinated response to be developed.
While there were positive aspects to the development of the Action Plan, there were also a number of barriers identified that hindered its execution. Many of these barriers are long standing issues in the disability-health policy interface rather than new issues and these were further exacerbated in the context of the COVID-19 pandemic. Overall, there was positive engagement with the sector once the Advisory Committee and Roundtable were established, however fully implementing responses was more challenging due to issues such as lack of collection of data on which to base decisions and ongoing difficulties in the disability health interface.
Policy barriers
Lack of disability data
> Ongoing lack of collection of quantitative disability specific and linked data at state/territory and federal levels meant there was a dearth of evidence on which to create an informed policy response.
Lack of joined-up government
> Challenges of linking up across government departments and different levels of government hinders fast and effective policy action. An issue that emerged in the disability policy response was a lack of clarity on who had responsibility for planning and actioning policies to help protect people with disability from COVID-19 risks.
> Compartmentalisation between disability and health systems with a lack of connection and communication between the systems acted as a barrier to a cohesive COVID-19 disability policy response.
> Lack of government focus on people with disability due to the absence of a whole of government disability advisory process or structure meant people with disability were ignored by the Federal Government at the start of the pandemic. This necessitated strong advocacy from disability stakeholders to raise government awareness of the need for COVID-19 policies specifically for people with disability.
Lack of consultation with people with disability
> While the input of experts was valued some interviewees felt there needed to be greater consultation with people with disability. This has been a feature of Australian disability policy with a lack of meaningful consultation with people with disability in the development of disability policy to date.
What can we learn from the COVID-19 disability policy response?
Overall, our research suggests the disability advocacy networks built up over an extended time period and the lobbying done by these networks, during the pandemic enabled the development of an Advisory Committee, Roundtable and Management and Operational Plan for People with Disability which pushed action on COVID-19 and disability. However, gaps in the governments’ response continued due to structural issues between levels of government and agencies with responsibilities to people with disability.
More broadly, interviewees highlight some important factors in how the policy process operates and how policy advocates can become more successful in their attempts to influence policy. Although the Federal Government initially ignored people with disability in their COVID-19 policy response, the mobilisation of disability advocates to attract policy makers attention to the issue succeeded. Once their attention had been garnered there was a rapid development of a policy document to guide polices to be implemented to mitigate COVID-19 risks for people with disability. Our report also sheds light on structural barriers to policy change, in the context of needing rapid action. The barriers and enablers identified in our research give rise to some key learnings and recommendations to support future responses including around future outbreaks and emergencies:
Provide opportunities to develop networks which can be easily mobilised in crisis situations
Develop an enduring advisory structure to facilitate cross-sector action around disability and health issues
Ensure advisory structures/ committees have direct communication channels to decision makers.
Support leaders and ‘champions’ within government departments
Ensure people with disability participate in the policy process in a more meaningful way.
Ensure appropriate data systems and collection are in place.
This report was authored by Celia Green, Gemma Carey and Helen Dickinson from the Centre of Research Excellence in Disability and Health. You can read the full report here
Moderator: Celia Green