What happens post‐lockdown for people with disability? Autonomy, quality of life, service access and health changes for people with spinal cord injury in Victoria, Australia after COVID‐19 social distancing restrictions

Abstract Social distancing restrictions are undoubtedly important for controlling the spread of COVID‐19 however, they are also adversely impacting population health and health service access. It is important that priority populations with a disability which may already have adverse health, access to health services, and autonomy and participation compared to those without disability, are able to receive preventative health and social care during periods of restriction. The impact of social distancing restrictions on people with disability is not uniform nor well‐understood. Research has been cross‐sectional and considered data gathered during social distancing restrictions, or longitudinal, considering data gathered during a pre‐pandemic baseline. This longitudinal study investigated the impact of lifting social distancing restrictions on priority domains for people with disability including autonomy and participation, access to health services, health issues and quality of life. People with spinal cord injury in Victoria, Australia (n = 71) completed a survey towards the end of social‐distancing restrictions (T1) and 6‐months post social distancing restrictions (T2). Non‐parametric tests for significant differences confirmed that 6‐months post‐lifting social distancing restrictions participants experienced a significant increase in health conditions, a significant decrease in the number of inaccessible health services, and a significantly lower level of limitations across participation and autonomy, outdoor autonomy and work and education domains. QOL improved 6‐months post lifting restrictions, however not to a significant level. The adverse health experienced by people with spinal cord injury after lifting restrictions may in part result from limited health service access and reduced participation during the time of restrictions. Clear definitions of what constitutes as essential care may ensure that eligible and required care remains received during lockdown or instances when service provision is compromised. Health and social care providers should be equipped with the knowledge of priority populations so that their support can be targeted to those most in need.

pation compared to those without disability, are able to receive preventative health and social care during periods of restriction. The impact of social distancing restrictions on people with disability is not uniform nor well-understood. Research has been cross-sectional and considered data gathered during social distancing restrictions, or longitudinal, considering data gathered during a pre-pandemic baseline. This longitudinal study investigated the impact of lifting social distancing restrictions on priority domains for people with disability including autonomy and participation, access to health services, health issues and quality of life. People with spinal cord injury in Victoria, Australia (n = 71) completed a survey towards the end of social-distancing restrictions (T1) and 6-months post social distancing restrictions (T2). Non-parametric tests for significant differences confirmed that 6-months post-lifting social distancing restrictions participants experienced a significant increase in health conditions, a significant decrease in the number of inaccessible health services, and a significantly lower level of limitations across participation and autonomy, outdoor autonomy and work and education domains. QOL improved 6-months post lifting restrictions, however not to a significant level. The adverse health experienced by people with spinal cord injury after lifting restrictions may in part result from limited health service access and reduced participation during the time of restrictions. Clear definitions of what constitutes as essential care may ensure that eligible and required care remains received during lockdown or instances when service provision is compromised. Health

| INTRODUC TI ON
The COVID-19 pandemic has had an impact on global health.
Countries have undertaken diverse measures to reduce the spread of COVID-19, including social distancing restrictions and stay-athome orders (Tuijt et al., 2021). Various groups are impacted by the pandemic and the consequences for all groups are not uniform nor well-understood. For example, people living with a chronic disease report higher levels of fear of contracting COVID-19 (Korukcu et al., 2021), parent stress has increased during the pandemic (Freisthler et al., 2021), and for young people, mood, stress and substance use have been adversely impacted as a result of social distancing restrictions (Emery et al., 2021).
A combination of factors (e.g. increased COVID-19 cases and loss of employment) are contributing to adverse health outcomes during the pandemic, and social distancing restrictions also play a critical role (Devaraj & Patel, 2021). Knowledge gaps surrounding the impact of social distancing restrictions on health status and health service use exist. For example, our understanding of the long-term impact of the pandemic (Sachser et al., 2021), particularly after the lockdown has ceased, is unclear. Additionally, limited research has focused on the impact of social distancing restrictions on the health and well-being of people with disability (Okonkwo et al., 2021).
Preliminary research confirms that social distancing restrictions may protect people with disability from infection, whilst simultaneously worsening conditions for some (Courtenay & Perera, 2020).
People with intellectual and developmental disability have experienced worsened quality of life outcomes during the pandemic (Friedman, 2021). Compared to people without disability, people with disability have had significantly higher stress levels and greater difficulty accessing health services during the pandemic (Okoro et al., 2021). Problematically, this inability to access health services may be contributing to long-term adverse physical and mental health outcomes (Theis et al., 2021). It is essential that research continues to investigate the impact of the COVID-19 pandemic, and consequences of the pandemic, on the health and well-being of people with disability. Such research needs to consider the needs of groups with distinct conditions (Turk & McDermott, 2020), and a disabilityinclusive COVID-19 response is required (Kuper et al., 2020).
There is an emerging body of literature investigating the impact of COVID-19 and social distancing restrictions on the health and well-being of people with spinal cord injury (SCI). The most robust research is longitudinal and has compared health and well-being outcomes during the pandemic to a pre-pandemic baseline. Findings are somewhat mixed however generally find adverse health and wellbeing during the pandemic compared to prior. Elaraby et al. (2022) found that compared to pre-pandemic levels, during the pandemic, people with SCI report significantly lower physical and psychological health, and social relationships. Whilst García-Rudolph et al. (2021) found that people with SCI reported significantly lower levels of social integration and significantly higher levels of depression during the pandemic compared to prior. They also found that a younger group of people with SCI reported significantly lower physical and psychological health whilst an older group of people did not report significantly lower levels across these domains. Cross-sectional work has confirmed that during the pandemic people with SCI experience poorer access to healthcare (Hearn et al., 2021;Vives Alvarado et al., 2021), and increased secondary health conditions (Hearn et al., 2021).
Targeted support to address the health and well-being of people with disability post-COVID-19 is necessary. Informing targeted support efforts requires a better understanding of the impact of the pandemic on priority domains for people with disability and and social care providers should be equipped with the knowledge of priority populations so that their support can be targeted to those most in need.

K E Y W O R D S
autonomy and participation, COVID-19, disability, health service access, longitudinal, social distancing

What we know
• Social distancing restrictions control the spread of COVID-19 however, can also adversely impact population health.
• Compared to a period prior, health service access and quality of life are poorer during the pandemic.
• The impact of lifting social distancing on quality of life, health service access and health issues remains unclear.

What the paper adds
• Compared to a period where social distancing restrictions have been lifted, health service access for people with spinal cord injury during social distancing is poorer.
• Secondary conditions increase after lifting restrictions and this is potentially due to limited health service access and reduced participation and autonomy during social distancing.
• Health and social care providers need to be resourced to provide targeted care for people with disability under the context of COVID-19 social distancing restrictions.
Most research that has investigated the impact of the pandemic on people with disability and particularly people with SCI has been cross-sectional and assessed data gathered during social distancing restrictions and a heightened number of cases, or longitudinal, using data gathered prior to the pandemic (Bignardi et al., 2020;Kim et al., 2020;Magson et al., 2021;Pierce et al., 2020). Such research has been incredibly useful and confirmed that the pandemic has had an impact on the health and well-being of people with and without disability. However, the long-term consequences of the pandemic on the health and well-being of people with disability are unclear.
Research needs to move beyond longitudinal designs where data gathered during the pandemic is compared to retrospective data, and instead compare data gathered during the pandemic and social distancing restrictions with data collected after restrictions have ceased. Such research will confirm which domains will recover or worsen after the pandemic and inform the delivery of responsive health and social care efforts.

| The current study
The current longitudinal study aimed to investigate the impact of lifting social distancing restrictions on priority domains for people with SCI residing in the state of Victoria, Australia. The research question, priority domains considered, and methodology was informed by the literature and the investigator team which included peer-support workers with lived experience of SCI from an organisation that provides health and social support to people with SCI. The study was designed to answer the following question: 1. What is the impact of lifting social distancing restrictions on the availability of health services, health conditions, quality of life, and participation and autonomy of people with SCI living in Victoria, Australia?
The study was informed by the following hypotheses: H1: As quality of life outcomes are poorer during COVID-19 restrictions (Friedman, 2021), quality of life improves subsequent to lifting social distancing restrictions.
H3: As adverse health outcomes are theorised to emerge as a result of poorer access to health services during COVID-19 restrictions (Theis et al., 2021), there will be increased adverse health outcomes which only become identifiable subsequent to lifting social distancing restrictions.
H4: As COVID-19 restrictions have an adverse impact on participation and autonomy (Ammar et al., 2020), autonomy and participation will improve subsequent to lifting social distancing restrictions.

| ME THODS
The La Trobe University Human Research Ethics Committee provided approval to conduct this research (protocol ID: HEC20197).

| Participants and recruitment
Members and clients from a health and social service organisation providing targeted support to people with SCI were recruited to participate in this study. The organisation provides peer support, advocacy support, daily living and personal care and skill development and capacity-building support. Participants were recruited via a personalised email (n = 1100). One hundred and twenty-seven people completed the T1 survey and 71 completed the T2 survey.
Demographic information has been included in Table 1.

| Measures
Questions and measures were identified via a collaborative approach to identify research priorities amongst university researchers and people with lived experience of disability (Lakhani, et al. 2021).
Outcome data included measures for participation and autonomy, quality of life, health service access, and health conditions. In relation to autonomy and participation, participants were requested to complete the Impact on Participation and Autonomy Questionnaire [IPAQ] (Cardol, De Jong, & Ward, 2002). The IPAQ measures the extent of difficulties that people with chronic conditions and/or neurological disability have across five domains: Autonomy Indoors, Autonomy Outdoors, Family Role, Social Life and Relationships, and Work and Education. A higher score is indicative of having greater difficulties. The IPAQ has been used amongst people with SCI (Bombardier et al., 2016;Cardol et al., 2001;Cardol, de Jong, van den Bos, et al., 2002;Craig et al., 2015). Cronbach's alphas were Health service access was measured by summing the number of health services participants indicated being unable to access over the reference period. These services included: general practitioners, urologists, occupational therapists, physiotherapists, specialised rehabilitation, masseur, osteopath and podiatrist. Additionally, participants were able to indicate whether they were able to access two local SCI services. The health and social service organisation recruiting participants did not provide these services and was not listed as one of the local specialist SCI services. A higher number was indicative of being able to access fewer services. Similarly, health issues were measured by summing the number of health issues a participant indicated having over the reference period. These issues were informed by Kalpakjian et al. (2007)      issues during T2. As clarified in Table 6, the proportions of people indicating that urologist, physiotherapist and spinal health services were available between T1 and T2 were significantly different. A greater proportion of participants indicated that the suggested services were available during T2.

| DISCUSS ION
This study aimed to investigate the impact of lifting social distancing restrictions on priority domains for people with SCI residing in the state of Victoria. Access to health services was adversely impacted during COVID-19 restrictions and the hypothesis (informed by Connor et al., 2020;Dalise et al., 2021;Okonkwo et al., 2021;Okoro et al., 2021) was upheld. In this regard, a significantly greater proportion of participants indicated that physiotherapists and urologists were not accessible during lockdown restrictions.
These health services often require face-to-face visits, and/or their practices benefit from information gathered from scans requiring in-person attendance (i.e. X-rays or MRI), thus the ability to access these services may have been compromised. The finding that people with SCI experience limited access to health services during a period of lockdown is not surprising and has been confirmed elsewhere (see Gustafson et al., 2021).  In their study of health-related QOL amongst people with SCI prior to, and during the pandemic, Matsuoka and Sumida (2021) found that people with SCI reporting lower health-related QOL had fewer home nursing and rehabilitation service visits compared to a group where health-related QOL remained unchanged.
In response, it is important that health and social services are prepared to address the potential increase in health issues, specifically health issues for priority populations which have a greater likelihood of developing secondary health issues, subsequent to lockdown and social distancing restrictions being lifted. In this respect, providers should be resourced to handle increased cases, and ensure that they have the knowledge base to address complex secondary Health issue present 6 9 Injuries caused by loss of sensation issues. Furthermore, the potential psychological consequences of experiencing these secondary issues should not be overlooked, and an integrated public health approach to addressing secondary issues needs to be employed. In this respect, allied health providers and specialist providers should work in concert to ensure that those who had health issues potentially resulting from inaccessible health services during the pandemic are able to receive adequate care.
People with neurological disability are more likely to have secondary health conditions (Foster et al., 2015). The fact that social distancing restrictions can contribute to these conditions suggests that healthcare systems need to develop better practices to support people with disability or people with a greater risk of developing secondary conditions. This is especially the case during the time of a pandemic. It is argued that telehealth may be a worthwhile method to address the health consequences of the pandemic for people with SCI (Elaraby et al., 2022;Hearn et al., 2021). Telehealth has certainly been a valuable health service delivery method during the period, evidenced by an increase in telehealth delivery amongst rehabilitation physicians who work with people with traumatic injury, including SCI (Gustafson et al., 2021). Despite the value of telehealth, a recent survey of rehabilitation physicians confirmed that over half felt as though the delivery method did not meet their patients' distinct needs (Gustafson et al., 2021). Consequently, ensuring health service access remains an important goal moving forward (Gustafson et al., 2021), and such access should allow for a combination of delivery options to ensure that patient needs are met. In relation to employment and work, the IPAQ includes six questions which generally measure the ability of someone to obtain and keep work. The current study findings indicating that experiencing a lockdown can adversely impact employment also has been confirmed (Bauer & Weber, 2021). People with disability already face adverse employment consequences (Mizunoya & Mitra, 2013), so it is important that subsequent to the pandemic, employment service providers provide targeted support for these individuals. This can be in addition to, or in conjunction with, strategies utilised by health and social care providers broadly to support employment outcomes of people with disability.
Significant differences in autonomy and participation domains including family role, social life and relationships, and autonomy indoors were not apparent. In some respects, this appears to be reasonable given the nature of the measures used for these domains. Finally, the findings from this research included a population of 71 and produced significant findings. Replicating the study with a larger sample is warranted.

| CON CLUS ION
Social distancing restrictions have an adverse impact on health service use, autonomy and participation, and health outcomes of people with SCI. Access to health and social services subsequent to the removal of social distancing restrictions may remedy some of these adverse consequences. It is important that future research investigate the long-term impact of social distancing restrictions on the health and well-being of populations who may experience disadvantage, including people with disability, ageing adults, and people with income insecurity. Health and social service providers need to be well resourced (financially and professionally) to address the health consequences which emerge due to social distancing restrictions. They must also be supported with the knowledge and training to provide appropriate care to priority populations experiencing distinct health and social consequences which differ from the general public.

AUTH O R CO NTR I B UTI O N S
Dr Ali Lakhani is the lead in all aspects of this study and the development of the manuscript including: study conceptualization, data collection and analysis and writing for publication. Salvatore

CO N FLI C T O F I NTE R E S T
The authors have no conflict of interest to declare.

DATA AVA I L A B I L I T Y S TAT E M E N T
Data underpinning this study has not been made publicly available.