“Special or Unique”: A new report from Disability Rights UK and LKMco
Education ministers should boost the disability-specific elements of anti-bullying guidelines and personal, social and health education (PSHE), a new report urges today (2nd August 2019).
Based on focus groups with 12-14 year old children, the report suggests there is widespread ignorance of disability issues among schoolchildren, even those who have special educational needs or who are disabled (SEND).
Researchers found widespread frustration amongst SEND pupils in both mainstream and special schools at the failure of teachers and school leaders to deal with bullying and to promote inclusive classroom environments.
Special or Unique – Young People’s Attitudes to Disability, which is based on 11 focus groups with a mix of SEND pupils and non-SEND pupils in mainstream and special schools, is published by the DRILL programme (Disability Research on Living and Learning).
DRILL is a 5 year programme funded by The National Lottery Community Fund, the biggest funder of community activity in the UK, and is led by disabled people. It aims to build better evidence about approaches to enable disabled people to achieve independent living, which is used to inform future policy and service provision, as well as give a greater voice to disabled people in decisions which affect them.
As well as uncovering widespread unhappiness at schools’ response to bullying behaviour, the research suggests that young disabled people are often excluded from social networks and have few friends.
Lead researcher Evan Odell from Disability Rights UK said: “These findings show that, in some areas, little has changed for disabled children in the last 40 years or so.
“Schools, special educational needs coordinators and teachers have understandably emphasised the need for reasonable adjustments and classroom support for pupils with SEND. Now they need to deal with bullying and ensure disabled children have the same chance to develop social skills and share in the experiences that mark out the teenage years.”
The Department for Education should support teachers and schools by developing SEND-specific anti-bullying guidance and establishing a minimum inclusion standard for disability awareness in the PHSE curriculum, the report says.
The disability component of that curriculum, the report suggests, should be co-developed and co-delivered by disabled people’s organisations working with schools and councils.
The focus groups suggest:
- Many young disabled people don’t see themselves as disabled – with disability most frequently linked by SEND and non-SEND pupils to use of a wheelchair – or understand why they received extra support or ‘reasonable adjustments’
- Researchers felt this could be because of a wish to keep a degree of privacy and control
- Asked to describe themselves many SEND children used self-deprecatory terms such as annoying or lazy – something the researchers suggest could reflect ‘gallows humour’ or a defensiveness that might affect them asking for help or support
- Pupils with SEND want their schools to be more proactive in facilitating their social and educational inclusion and reducing bullying
- Despite that, many SEND pupils spoke positively about the subjects or activities they enjoyed – suggesting that other demographic factors are more important than disability for disabled children in an accessible environment that provides sufficient support.
The report argues that supporting pupils with SEND to better understand their disability and the reasonable adjustments and support they can access, could improve academic outcomes and better prepare them for life with disability.
Kate Bowen-Viner, Senior Associate at LKMco, who provided support with the design of the research, said:
“We hope this research will help teachers, school leaders and policymakers better understand how they can support young disabled people. The research also highlights the value of creating forums for young people to reflect critically on the perceptions they have of their peers with special educational needs and disabilities.
The report’s other recommendations include:
- School leaders should foster greater openness about SEND and disability in the school, and support pupils with SEND to understand their own disability.
- Local disabled people’s organisations should be involved in planning and delivering PSHE lessons on disability.
A copy of the full report is available here.
Prevous page or post | Next page or post
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 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
Stories of Our Lives | PDF version
Stories of Our Lives | Word version
For further information about the project please follow the link chronic-illness-citizenship-mobilising-collective-voice-social-change/
Prevous page or post | Next page or post
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/
Prevous page or post | Next page or post
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.
Prevous page or post | Next page or post
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.
Prevous page or post | Next page or post
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
Prevous page or post | Next page or post
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)
– 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:
- How can findings from the DRILL Programme inform employment policies and practice?
- What factors contribute to the persistent disability employment gap in Wales?
- 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.
Prevous page or post | Next page or post
News: Platinum Training Institute proud to be a partner on the ‘Empowering people through physical activity’ project
Platinum Training Institute, a training provider in Northern Ireland that helps people pursue their career in health and fitness, is excited to be a partner on the project, ‘Empowering people through physical activity.’ The project which funded by DRILL, is led by the Mental Health Foundation along with various partners including Queen’s University Belfast, Praxis Care and Northern Ireland Chest Heart and Stroke. It is a pilot study which aims to design and develop a physical activity intervention in Northern Ireland, for people with serious mental health problems with co-production at its heart.
Platinum Training Institute’s role in the study is integral. A selection of personal trainers from Platinum Training Institute, all of whom have extensive experience working with people with mental health problems, will work directly with participants to get to know participants and understand what they want from an intervention. Participant discussion and feedback at co-production workshops will be used by Platinum Training Institute to inform the design and delivery of the physical activity programme. Personal trainers will take a client-centred approach, and their professional experience will allow them to appropriately monitor and adapt activity sessions with clients accordingly, giving them the best chance to succeed.
Lee Havern, founder of Platinum Training Institute has said: ‘I strongly believe that engaging in physical activity can have a range of benefits for people with mental health problems, however it is important that the exercise professional has an understanding and knowledge of how to work with clients with mental health conditions. Our course, ‘Physical Activity for Adults with Mental Health Conditions’, equips personal trainers with the relevant skills and expertise to work with this population group. We are excited to work on this exciting and important project and its values are very aligned with those of Platinum Training Institute.’
Please click the link for further information about the project Empowering people through physical activity
Prevous page or post | Next page or post
News: Joint oral statement by APDA, Disabled People Against Cuts and Disability Rights UK
British government policy at national, regional and local levels repeatedly refers to ‘helping people to stay independent for as long as possible’. It claims its policy accords with Article 19 of the UN Convention on the Rights of Persons with Disabilities but demonstrates a failure to comprehend the concept of ‘independent living’ based on the right to exercise choice and control, and equity in life chances. It frequently justifies removal of essential support on the grounds of ‘helping’ to ‘improve their independence’, effectively subverting Article 19 rights to remove rights
After 2009, disabled people hoped for equality, fair treatment and the opportunity to participate fully in society. Instead cuts to social care have made it harder for disabled people to live independently.
Social inclusion has been seriously prejudiced by government attempts to cut costs through so-called welfare reform such as Universal Credit and the abolition of the Disability Living Allowance.
Austerity measures are disproportionately affecting disabled people’s right to an adequate standard of living as set out in the UN CRPD. Assessments are not informed by disabled people’s lived experience of impairment.
The reduction in financial support available to many disabled people has caused increased poverty and a deterioration in wellbeing and the quality of life. Many cut down on food and heating, use food banks and borrow money that they are ill-equipped to repay.
With many health, social care and public transport services devolved, we see:
- More children in ‘special schools’ rather than mainstream education
- The growing use of compulsory detention/forced treatment powers contained in mental health legislation
- A shortfall in housing that meets the needs of disabled people
- Lack of investment in services supporting independent living
- Inadequate investigation into unexpected deaths of disabled people in state care.
APDA, Disability Rights UK and DPAC have come together to oppose such retrogressive austerity measures. We urge the UN to remind the UK Government to:
- Work with disabled people
- Act on the UN Rapporteur’s recommendations following its 2018 Poverty Review
- Not to forget the UN’s 2016 report that stated that the UK government had systematically violated the rights of people with disabilities through its 2010-2015 welfare ‘reforms’.
For further information about the project click here humare-avaaz-voice-exploring-experiences-barriers-faced-disabled-asian-women/
Prevous page or post | Next page or post
Blog: February in New York, APDA
UN Blog
February in New York is far from ideal – it’s bitterly cold – but that’s when the UN’s 57th Session of the Commission for Social Development was held. The Commission is the advisory body responsible for the social development pillar of global development.
The priority theme for 2109 was ‘Addressing inequalities and challenges to social inclusion through fiscal, wage and social protection policies’.
APDA has had ‘special consultative status’ with the Commission, one of a number of NGOs (non-governmental bodies) across the world to have this prestigious status because of valuable work nationally and internationally.
Pradip Shah (our Chair) [photo – perhaps from our Annual Report), two carers and a staff member made the trip to contribute to the discussions and advocate for the rights of disabled people generally. Notably, APDA was in a minority of NGOs that delivers front line support services as well as performing advocacy and advisory functions and therefore could speak from the authoritative position of ‘lived experience’.
Pradip’s ‘journey’ to New York and back – from travel logistics to everyday issues – was not only an object lessons on the barriers to independence faced by disabled people but also a great example of what can be achieved by society making reasonable adjustments and people showing simple goodwill. Having said that, the seeming lack of fully accessible facilities and poor signage in the UN building was a distraction from more important social inclusion issues, a point we forcibly made to the UN in open forum.
We made our presence felt. People listened to Pradip, not just because he obviously spoke from lived experience but also because of the cogency of what he said. He represented the position of all disabled people in the UK, not just London’s Asian community that APDA specifically supports with it culturally sensitive day care and home care.
Below is a link to the UN’s TV channel. We particularly recommend the Civil Society Forum where the UK’s recent record on social protection, specifically Universal Credit/impact on women, came in for cogent criticism! Two interesting opinions were put forward by Philip Alston, Special Rapporteur on extreme poverty and human rights, UN Human Rights Council, Professor of Law at New York University: (a) that austerity had become an ideology, and (b) that if you asked a group of misogynists what changes they would like to Universal Credit, they would answer ‘not many’ – worrying thoughts! (You need to go 34 minutes into the video for the keynote address.)
Go to our website (apda.org.uk) to learn more about our culturally sensitive services.
Prevous page or post | Next page or post
/div>