DRILL Blog and News

News: First publication from the Chronic Illness inclusion Project

We are very excited to share the first publication from the Chronic Illness inclusion Project research with you.

Stories of our Lives is a compilation of 5 case studies from our 8 week online focus group on benefits and work last autumn. (Pdf and Word versions attached). These powerful testimonies illustrate some of the themes we will be exploring in our final project report:

  •  Energy impairment is a common experience across many different health conditions and disease categories.
  • People with energy limiting chronic illness have a strong desire to contribute to society but are locked out of mainstream employment employment models.
  • The strategies for inclusion and equal citizenship of people with ELCI often lie outside of formal employment.
  • Assessment systems for disability benefits do not capture the impact of energy impairment, especially the cognitive features.
  • Existing forms of disability employment support do not address the barriers to work with energy limiting chronic illness

There is much more to tell and we hope to secure support to produce a full policy report on social security and employment with chronic illness in due course.

The Chronic Illness Inclusion Project is about much more than social security and employment. Look out for our manifesto for inclusion and final report at the end of 2019.

With best wishes,

Catherine Hale.

Please download paper at reclaiming-chronic-illness

For further information about the project please follow the link chronic-illness-citizenship-mobilising-collective-voice-social-change/

 

News: A paper from Barod based on the DRILL-funded AWPF research.

We are delighted to say our paper with Jan Walmsley, based on the DRILL-funded AWPF research, has just gone live.

The link to the overview of the paper can be found below.

https://www.tandfonline.com/doi/full/10.1080/09687599.2019.1613960

There are a limited number of free links we can send to people who do not have university access to the journal. If that applies to you, please contact http://barod.cymru/

For further information about the project follow the link to bridge-changing-attitudes-communities-turning-skills-experience-earnings-self-advocacy-organisations-self-advocates/

 

Blog: The Chronic Illness Inclusion Project

I’m on my way to Belfast to present the findings of our research to the DRILL team. For someone who works from bed and hasn’t got out and about much for the past 30 years, this feels momentous.

The Chronic Illness Inclusion Project has collected masses of valuable knowledge and data on the lived experience of chronic illness. Four months of online focus groups and a survey of over 2,000 people. This will be the first time we share any of it, in the lead up to our report and manifesto at the end of 2019.

It’s exciting because I think our work is revealing a hidden side to disability: the unhelpful and even hostile attitudes to people with invisible and energy limiting chronic illness and ways these attitudes disable us. I look forward to hearing the response to our presentation. I hope our work will serve to expand understandings of what ableism looks and feels like, and lead to new ways of challenging it.  People with energy limiting conditions are the second largest group of disabled people in the UK so it’s vital that our lived experiences are heard.

It’s also exciting because, as well as looking forward to meeting the DRILL team, I will be meeting our advisory group member and volunteer, Victoria Clutton, for the first time. Most of my colleagues in the CIIP have never met in person before. We collaborate online from different parts of the country. This meeting is a rare opportunity to see each other, and be seen, face to face, and the DRILL team has stopped at nothing to get us here and meet our needs.

It’s also a huge challenge. Will I be wiped out from the travelling? Will I have one of my frequent but random bad days and not be able to do credit to all our work? Even on a good day, I can’t deliver a presentation for more than 5 – 10 mins without my brain shutting down. So I’ve been given extra time as an adjustment.

Our presentation on 5th June is just a small part of an exciting agenda about the legacy of this groundbreaking research programme. I want to hear about the work of others. I want to be part of the conversation. But it’s a full day programme and my overall function is limited to two to three hours at best. The rest of the time I’ll be lying down and/or in a stupor, to put it bluntly. It’s frustrating to have to miss out.

But these challenges aren’t just mine, they are common to the chronic illness community. With all the best support in the world we often just can’t take part in things as we would like to. So hopefully this event will also serve as a vital opportunity to bring to light the access issues faced by people with energy limiting illness and begin a conversation about what inclusion means when barrier removal isn’t enough to enable participation.

Catherine Hale.

 

Blog: ‘Match Me – what works for effective allocations of adapted/ accessible social housing in Scotland’.

This reflection highlights the enablement of two self-identified disabled individuals involved with the DRILL funded project:

‘Match Me – what works for effective allocations of adapted/ accessible social housing in Scotland’.

 Project Context

Match Me was a 21 month research project looking into the allocation of adapted and accessibly designed social housing for disabled house seekers/tenants. The project examined what works and what does not. The project partners included Horizon Housing, Housing Options Scotland and the University of Stirling. Three local authority case study areas took part in the research. The project tracked the lived experiences of twenty-eight households with a disabled social housing applicants/new tenant over course of one year. Each household was interviewed twice. Alongside this, observations were carried out into the allocation systems used by the three local authority case studies. Match Me used a co-production approach through steerage from a Project Advisory Board, recruitment of three self-identified disabled Peer Researchers and delivery of three all day feedback and discussion sessions held within each of the local authority case study areas.

Match Me Research Assistant

Hello, I’m Dr Dianne-Dominique Theakstone. I worked as a Research Assistant on the Match Me project. I’m registered blind, thirty-six years old and live in Stirling. I was involved with the early inception of the research and all the way through the pilot study in 2016. My support needs as an early career researcher are mainly around access to written information and sighted-guide assistance during field work in unfamiliar environments.

The national scheme called Access to Work provided funding for a support worker. I worked three days a week on the Match Me project and utilised twelve hours of support worker services. My support worker was able to help me access pdf files, for instance, which were inaccessible for my laptop with Jaws (a type of speech software). My support worker assisted me to navigate websites especially where there was a lot of information to skim read or where there were inaccessible features, such as unlabelled buttons for Jaws to recognise. My support worker would proof read written materials that I produced and help with the creation of PowerPoint presentations for local authority feedback sessions. I conducted interviews with disabled social housing applicants/tenants in their homes or in public spaces. Although I’m a Guide Dog Owner, I currently have Merlin a very handsome three-year-old black lab, I need to know a route in order to give Merlin instructions on where to guide me. Being totally blind I also found social interactions within group environments challenging due to the lack of eye contact. My support worker would assist in group settings during the project by alerting specific individuals that I wished to speak to them or by distributing project materials on my behalf.

I’m grateful to DRILL for providing the opportunity for me to work as a Research Assistant on such a fantastic project which produced a unique robust evidence-base around disabled social housing applicants/tenants lived experiences. I’m aware of the challenges facing disabled people in general who seek employment. The Match Me project greatly developed my skills as an early career researcher, especially in the area of supervision of peer researchers. I found everybody on the Match Me team inspiring and I look forward to taking my confidence and passion forward in future co-production research.

 

Match Me Peer Researcher

Hello, I’m Zack (not my real name) and I was a Peer Researcher on the Match Me project. I chose anonymity while taking part on the project. I’m in my sixties, registered blind and live in a rural location in Scotland. The role was attractive to me because it enabled me to work with Disabled persons while trying to seek out the problems, they may be experiencing in finding suitable adapted accommodation. This was relevant as I had a poor experience of housing issues when I became classed as disabled.

My experience of the Match Me project was I met some inspirational people both as interviewees and people in the project itself. I found that the training for the Peer Researcher role created a supportive environment. The training session lasted 4 hours. The first half covered an overview of the project, the peer researcher role, gaining consent, PVG checks and travel expenses. The second half focused on key terms used in interviews (such as informed consent and anonymity), field work safety procedures, good listening skills, the interview schedule and a mock interview which I enjoyed. The Research Assistants were very supportive in enabling me to shadow a few interviews before supervising my interview skills.

I found that the main challenges in my area is it consists of very remote areas. Even when public transport is usable, such as trains, there can still be problems when engineering work is undertaken as the main station is unable to accommodate relief bus services by the entrance to the station. This involves a very long walk away from the station and unfortunately there is no passenger assistance either to or from the replacement service. Local bus services are limited as well as not reliable. Fortunately, the Match Me project was very accommodating over travel expenses, normally refunded on the same day or following, which enabled the Peer Researcher to fulfil their role.

I would finally add that the whole experience was astounding, and I would definitely get involved in another project with the team. I’m already recruited to help out as a Peer Researcher on another co-production project called ‘My Support My Choice: users’ experiences of Self-directed Support in Scotland’ run by Self Directed Support Scotland and the Health and Social Care Alliance. I recently graduated with a BA (Hons) in Media Studies and I’m looking forward to remaining an active ambassador and role model for local disability related organisations.

 

 

 

News: University of Worcester Guardian Article

The University of Worcester has launched groundbreaking research into the nationwide shortfall of disabled foster carers. It aims to discover what barriers stop disabled people from applying to become foster carers, and how these can be overcome.

Initial findings from the research, which is funded by the Drill programme (Disability Research on Independent Living and Learning) and the National Lottery, have identified attitudes, fear of benefit loss, wording used by foster agencies, and lack of role models as barriers to disabled people fostering.

“There’s a stigma attached to disability that determines how agencies view disabled people who might apply to be foster carers,” says Peter Unwin, principal lecturer in social work at the University of Worcester and the project’s lead researcher. “They tend to see only the disability and what you can’t do. It’s a very negative mindset that is robbing children of a caring environment and a potential new home.”

For further information about the project please visit mutual-benefits-potential-disabled-people-foster-carers/

Full article available at the guardian foster-carer-best-thing-disabled-people

 

 

News: Barod Interim Report

The Bridge is a two-year research project looking at how people with learning disabilities can have real work for real pay.
We are learning about four outcomes:
● How self-advocates can get real work
● What changes when self-advocates see themselves as workers
● How self-advocacy groups can become more independent by trading
● How being more business-like changes how self-advocacy groups are viewed.
The Bridge is funded by Big Lottery through the Disability Research on Independent Living and Learning (DRILL).

For further information on the project please follow the link changing-attitudes communities turning skills experience earnings self advocacy organisations self advocates

Full report available for download at The Bridge – interim report final version April 2019

News: Do you want to have your say about adult social care?

Call for research participants:

If you are a disabled person in Northern Ireland who has experience of adult social care, we would like to interview you for a piece of research called “Is It Me?” How attitudes in the adult social care system impact on the independent living choices for disabled people.”

We want to find out from disabled people how attitudes towards them, good or bad, have impacted upon their social care and on their choices and experiences of independent living. These attitudes might come directly from staff delivering the services, or from the policies and management of adult care services.

Adult social care can be provided by Trusts, the voluntary and community sector or privately. It can include:

  • Day care
  • Domiciliary care (care in

the home)

  • Nursing home care
  • Residential home care
  • Meals on Wheels
  • Social work
  • Respite
  • Information/Advice/

Counselling

  • Provision of equipment

We believe that disabled people have great expertise because they have lived experience of this issue. We really want to hear what disabled people have to say. These interviews will form the backbone of our research.

We are conducting interviews now. We can to arrange for the researcher to meet you near where you live, or we can arrange to do interviews over the phone, or online. If you would like to be interviewed please contact the DRILL researcher Darlene Corry by phone on 028 9029 7880 or email her at [email protected]

This is a research project led by Disability Action NI through the DRILL (Disability Research on Independent Living and Learning) Programme. The research is being done in co-production with disability activists who understand the rights of disabled people and adult social care.

For further information about the project please follow the link is it me how do attitudes within the social care system impact on the independent living choices of disabled people

 

News: Boardroom Apprentices wanted for incredible journey.

Could this be you?

Are you willing to give your personal time and play your part in something that really matters to you? Be prepared to be pushed outside your comfort zone?  Eager to learn and get involved?

Must be passionate, committed and share our values. No Board experience. Open to all ages (16+), all backgrounds and all abilities.

In return you get:

12-months experience on a Board within the public/third sector

Training to enhance your knowledge and understanding

A dedicated board buddy and support from fellow Boardroom Apprentices

Play your part in effecting change in our boardrooms

If you are interested in the programme then you can find more information at www.strictlyboardroom.com/apprentice

You can also find us on Twitter @BoardAppr or Facebook at https://www.facebook.com/boardroomapprentice/

Please note that the closing date is Monday 20th May at 4pm sharp and all applications must be completed in one sitting.

 

 

News: Fully Funded PhD Awarded

The DRILL Programme is delighted to announce that Ruth Nortey – DRILL 4 Nations Researcher based at Disability Wales – has been awarded a fully funded PhD opportunity. The research is entitled ‘What Works in Wales? Developing an evidence base to inform a kitemark for employers to address the disability employment gap’. The aim of the project is to identify an evidence base of ‘what works’ for disabled people in employment, and to contribute to the creation of a Disability Standard for employers.

Forming part of the DRILL legacy, this PhD research will be jointly supervised by Disability Wales and by Cardiff University’s Professor Debbie Foster, who is also a member of DRILL Wales National Advisory Group. This is a four-year PhD studentship, starting in October 2019 and ending in September 2023, is jointly funded jointly by the Economic and Social Research Council (ESRC) and Cardiff University Business School.

What is DRILL?

DRILL (Disability Research on Independent Living and Learning) is an innovative five-year UK-wide programme led by disabled people, for disabled people and funded by the Big Lottery Fund (BLF). The Programme is a four-nation project, led by Disability Action NI in partnership with Disability Wales, Disability Rights UK and Inclusion Scotland.

DRILL promotes coproduction and collaboration between disabled people and their organisations, academia, research bodies and policy makers. DRILL has funded 32 projects. This PhD collaboration is just one example of the growing connections between disabled people’s organisations and universities which have emerged throughout the course of the DRILL Programme.

How to research the Welsh Disability Employment Gap?

Much existing research on the disability employment gap concentrates on the number of disabled people out of work, often driving the short term political objective of getting disabled people off benefits and into any kind of work and overlooking the importance of job quality and careers.

In June 2018, Disability Wales Chief Executive Rhian Davies was a keynote speaker at a launch event organised by the Learning and Work Institute Cymru and the Welsh Government. This made 6 recommendations: one was to ‘develop a Wales Disability Standard’: a kitemark for employers to be part of the Welsh Government ‘Employability Action Plan’, which Ruth Nortey will help develop.

Building on DRILL-funded research from England, Scotland, Wales and Northern Ireland, this project aims to highlight what disabled people themselves regard as best practice in employment. Several DRILL-funded projects have explored issues directly relating to the employment of disabled people, including:

– Barriers and enablers to employment: Black disabled people living with Sickle Cell Disorders (SCD) (led by De Montfort University)

 Legally Disabled (led by Cardiff University)

– Getting On and Staying On (led by Sheffield Occupational Health Advisory Service)

– The Bridge: Changing attitudes and communities by turning skills and experience into earnings for self-advocacy organisations and self-advocates (led by Barod CIC).

The research will focus on 3 key questions:

  1. How can findings from the DRILL Programme inform employment policies and practice?
  2. What factors contribute to the persistent disability employment gap in Wales?
  3. What already works for disabled people in employment and how could future initiatives build on existing initiatives/practice to inform the development of a Welsh standard for employers?

Stage one will involve a secondary analysis of relevant data from DRILL projects – using data archived at the UK Data Service – alongside a documentary analysis of regional sources to develop an understanding of the Welsh context.

Stage two will develop ‘profiles’ of good practice, drawn from regional, national or international examples of organisations, occupations, or successful social policy or third sector initiatives. Creating ‘profiles’ will entail interviewing key actors and stakeholders as well as evaluating the stated outcomes.

Building upon existing DRILL networks, it is expected there will be scope for members of the four National Advisory Groups (NAGs) or the Central Research Committee (CRC) to form part of the PhD project steering committee. This will ensure that the research is coproduced at each stage, enabling disabled people to feed into future research and Welsh policy and service provision. In turn, it is envisaged this will also positively influence policies and practices in England, Scotland and Northern Ireland.

 

News: Disability Wales are recruiting for participants to take part in research

 

Co-production in Disability Research: Developing Future Strategies

As part of the DRILL Four Nations Research Project, Disability Wales will be focusing on co-production in disability research.  We are now recruiting for participants to take part in our research!

What is the research about?

We want to hear from research teams involved in DRILL funded projects in England, Northern Ireland, Scotland and Wales. We want to understand the experiences of coproduction, including:

  • the challenges and benefits in working on coproduced research
  • the impact of coproduction on project outcomes
  • Exploring an alternative language to describe ‘peer researchers’

What will I be asked to do as a participant?

You will be part of a focus group of up to 10 other participants and / or will participate in a one-to-one interview.  One focus group will be held in each nation (England, Northern Ireland, Scotland and Wales). The focus group will last around 1 hour but could be longer or shorter, depending on how much you would like to say.

After the focus group, we would like to speak to some participants individually. These one-to-one interviews will last around 45 minutes. The interviews will be used to gather more detailed information about experiences of research coproduction.

We hope to start the focus groups and interviews in late April and complete by early June 2019. We will arrange these at times convenient to all participants.

What will I get out of being a participant?

By being a participant in the research you will learn about, or reaffirm your knowledge of, coproducing research. You will have the opportunity to discuss your experiences of coproducing research, and to have your views heard and respected. You will contribute to research which will help us to understand the benefits and challenges associated in working on coproduced research.

We will also reimburse out of pocket expenses including support worker fees, communication support and travel expenses.

Further information

For more information on the research project please contact the lead researcher Ruth Nortey:

Email: [email protected]

Tel:    02920 887 325

 

 

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