Our Research

Our research is informed by disabled people’s lived experience. This is important because disabled people should be involved in the decisions that affect us and because our lived experience tells policy and decision makers what needs to change.

Inclusion Scotland regularly undertakes and contributes to research on issues which impact on disabled people’s lives and inclusion in society. We use this to inform policy and decision makers and wider society, so look out for opportunities to contribute to research.

We are particularly interested in research on our human rights social security, social care support and employment.

We promote the use of co-production methodologies which ensure that disabled people are involved in all aspects of research design and delivery. We work with academics and other organisations to support disabled people to contribute to their research.

Since the onset of the pandemic in March 2020 we have been researching disabled people’s experiences to find out the impact on Covid-19 and the responses to it.

 

Covid-19 Research

Rights at Risk- Covid-19, disabled people and emergency planning in Scotland – a baseline report from Inclusion Scotland (October 2020)

Rights At Risk is a more comprehensive look at our original survey findings. It takes stock of the situation disabled people were in before the pandemic, what happened to disabled people during the first months of the crisis as emergency responses were rolled out, what the long-term impact of the crisis might be for disabled people and what needs to happen now. We quote directly from the real life examples that people shared with us.

The Covid-19 crisis is far from over, and while we recognise that some issues are being addressed, disabled people are still experiencing consequences that are likely to continue, and even worsen. This report highlights and challenges these issues as well as the impact of the many decades of exclusion and discrimination against disabled people which are the backdrop to the crisis. We must ensure that disabled people must never again find ourselves so excluded and so poorly supported that we suffer the levels of despair highlighted in this report.

Rights at Risk- Covid-19, disabled people and emergency planning in Scotland – Full Report (PDF)

Rights At Risk is a comprehensive look at our original survey findings of over 800 disabled people’s experience of Covid-19. It takes stock of the situation disabled people were in before the pandemic, what happened to disabled people during the first months of the crisis as emergency responses were rolled out, what the long-term impact of the crisis might be for disabled people and what needs to happen now. We quote directly from the real life examples that people shared with us.

Rights at Risk- Covid-19, disabled people and emergency planning in Scotland (Word Doc)

Rights At Risk is a comprehensive look at our original survey findings of over 800 disabled people’s experience of Covid-19. It takes stock of the situation disabled people were in before the pandemic, what happened to disabled people during the first months of the crisis as emergency responses were rolled out, what the long-term impact of the crisis might be for disabled people and what needs to happen now. We quote directly from the real life examples that people shared with us.

Rights at Risk- Covid-19, disabled people and emergency planning in Scotland – Summary Report (PDF)

A summary of our Rights at Risk report. Rights At Risk is a comprehensive look at our original survey findings of over 800 disabled people’s experience of Covid-19. It takes stock of the situation disabled people were in before the pandemic, what happened to disabled people during the first months of the crisis as emergency responses were rolled out, what the long-term impact of the crisis might be for disabled people and what needs to happen now. We quote directly from the real life examples that people shared with us.

Rights at Risk- Covid-19, disabled people and emergency planning in Scotland – Summary Report (Word Doc)

This is a summary of our Rights at Risk report. Rights At Risk is a comprehensive look at our original survey findings of over 800 disabled people’s experience of Covid-19. It takes stock of the situation disabled people were in before the pandemic, what happened to disabled people during the first months of the crisis as emergency responses were rolled out, what the long-term impact of the crisis might be for disabled people and what needs to happen now. We quote directly from the real life examples that people shared with us.

Rights at Risk- Covid-19, disabled people and emergency planning in Scotland – Summary Report (Easy Read)

This is a summary of our Rights at Risk report in Easy Read. Rights At Risk is a comprehensive look at our original survey findings of over 800 disabled people’s experience of Covid-19. It takes stock of the situation disabled people were in before the pandemic, what happened to disabled people during the first months of the crisis as emergency responses were rolled out, what the long-term impact of the crisis might be for disabled people and what needs to happen now. We quote directly from the real life examples that people shared with us.

 

Disabled people’s lived experience of shielding: key survey results (July 2020)

This is a terrible time for us all but more so if your disabled been locked away like an animal it’s felt like it’s been awful especially if you also have depression.

Following the Scottish Governments update to their Shielding Guidance on Thursday 18 June we released a survey asking disabled people how they felt about the changes and if they were receiving the support they needed. Their experiences of shielding during the pandemic has deeply affected respondents. Many stated that they felt left behind or abandoned and that services which are supposed to be there to support people failed because of the crisis. There was also a feeling that people who are shielding could be left behind as restrictions are lifted for the general population. Our survey found that:

  • Some people who are shielding still aren’t getting the support they need.
  • People who are shielding are very concerned about the long-term impact on their physical and mental health.
  • People who are shielding are worried about going back to work.
  • Coming out of shielding will not be easy.
  • People with and without letters have been deeply affected by their experiences during the pandemic.
Disabled People’s Lived Experience of Shielding: Key Survey Results (PDF)

Research on disabled people’s experiences of shielding during the pandemic. Many stated that they felt left behind or abandoned and that services that were supposed to provide supportwere failing. People who were shielding felt they were going to be left behind as restrictions were lifted for the general population.

Disabled people’s lived experience of shielding: key survey results (Word Doc)

Research on disabled people’s experiences of shielding during the pandemic. Many stated that they felt left behind or abandoned and that services that were supposed to provide support were failing. People who were shielding felt they were going to be left behind as restrictions were lifted for the general population.

 

Initial Findings of Inclusion Scotland’s Covid-19 Survey (May 2020)

The Covid-19 pandemic affects all areas of our lives. In just a few weeks, life as we knew it changed beyond recognition. There has never been a more important time for disabled people to have a voice.

Disabled people are not just at risk from the virus. We’re at risk from the actions of public bodies and others who don’t understand who we are, what we need or what will work. Why? Because they haven’t asked us. Not only will this mean that thousands of us don’t get what we urgently need but getting it wrong costs providers valuable time and money. Yet, as disabled people, we’re well used to finding creative ways to do things because the usual ways don’t work for us. We want policy and decision-makers in Scotland to know what is really happening to disabled people on the ground, what needs to change and to recognise disabled people are experts in our own lives. Involving us, which includes taking the experiences set out in this report into account, is crucial to making the right decisions.

We created a survey to gather evidence of what disabled people are experiencing during Covid-19. Thank you to the 822 people who responded!

Our survey quickly showed that the Covid-19 crisis is having a significant impact on the mental health of disabled people and their carers. Around 15% of all respondents told us explicitly that the current crisis has negatively affected their mental health. Many hundreds of others told us about the stress and anxiety that they are experiencing.

Disabled people and their carers  are under significant pressure because:

  • Social care support has stopped or been reduced: Almost half of people responding on this issue told us that said that the Covid-19 pandemic has’ impacted the social care support they get, formal and informal. Around 30% of respondents told us their support had either stopped completely or had been reduced.
  • People have new or increased caring responsibilities: Around 40% of people who responded to this question are experiencing challenges with caring for children/family members since the start of the pandemic.
  • Disabled people are struggling to get access to the food and medicine they need: Around two thirds of those responding to this question (64%) said that the crisis has impacted getting the food or medicine that they need for themselves or the person they care for.
  • People are being asked to sign Do Not Resuscitate (DNR) notices: Though we didn’t ask a specific question about DNR, 4 respondents told us that they or someone they know had been asked to sign DNR notices or informed that they would not be ventilated should they contract Covid-19.
  • People are concerned that they will lose their job: Around one in ten respondents to this question (11%) were concerned that they could lose their job as a result of the pandemic.
  • Social distancing and isolation is proving extremely challenging: Disabled people with and without pre-existing mental health conditions are finding everyday life under lock-down extremely stressful. Significant numbers of disabled people (15) with existing mental health problems told us they are feeling suicidal.
Initial Findings of Inclusion Scotland’s Covid-19 Survey (PDF)

Initial findings from Inclusion Scotland’s survey of over 800 disabled people’s experiences of Covid-19. Published in May 2020.

Initial Findings of Inclusion Scotland’s Covid-19 Survey (Word Doc)

Initial findings from Inclusion Scotland’s survey of over 800 disabled people’s experiences of Covid-19. Published in May 2020.

 

“We have been completely abandoned”: Experiences of social care support during the 2020 lockdown

Between 3 and 24 July 2020 Inclusion Scotland surveyed disabled people and unpaid carers/ supporters to ask about their experiences of social care support during the COVID-19 pandemic. This report presents our key findings and builds on our two previous surveys carried out during the pandemic; a baseline survey about the impact of COVID-19 asking a range of questions, and our short survey about the experiences of people who were shielding .

“We have been completely abandoned”: Experiences of social care during the 2020 lockdown (Word)
“We have been completely abandoned”: Experiences of social care during the 2020 lockdown (PDF)

 

Disability Research on Independent Living and Learning (DRILL)

Inclusion Scotland was the lead organisation for the Disability Research on Independent Living and Learning (DRILL) Programme in Scotland, which funded co-produced research projects between 2015-2020

DRILL was a Big Lottery funded Four Nation Research Project which delivered the world’s first major research programme led by disabled people.

Research has traditionally been carried out by non-disabled researchers and has usually treated disabled people as subjects of research, rather than as equal partners in research. We believed that the results of research about disability would be better if decisions about what is researched and the way the research was done, was informed by the lived experience of disabled people. DRILL offered disabled people the opportunity to carry out research on issues that mattered to them.

To find out more visit the Drill website.

 

DRILL Scotland projects

The research projects that were funded in Scotland were:

 

A Public Inconvenience – Better toilets for inclusive travel

Lead research partner: Edinburgh Centre for Research on the Experience of Dementia Education Centre.

Partner Organisations: Scottish Dementia Alumni, PAMIS, Dementia Centre Hammond Care and Go Upstream

 

Examining the barriers faced by autistic people

Lead research partner: University of Glasgow, the research was carried out by autistic researchers.

 

Match me – what works for adapted social housing lettings?

Lead research partner: Horizon Housing/Housing Options Scotland. Partner Organisation: University of Stirling

 

The costs and benefits of good self-directed support

Lead partner: University of Stirling

Partner Organisations: Glasgow Centre for Inclusive living & Independent Living in Scotland.

Report not yet published.

 

Does it matter? Decision-making by people with learning disabilities

Lead partner: People First (Scotland)

Partner Organisation: Animate Consulting

 

Untapped Potential – How people with lived experience of mental health issues engage in civic and public life

Lead partner: Voices of Experience (VOX)

Partner Organisation: University of Strathclyde

 

Services for who? The experiences of disabled people with other characteristics when accessing services.

Lead Partner: Inclusion Scotland