DRILL Blog and News

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

 

 

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

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/

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.)

Civil Society Forum: Social Protection and Transformative Fiscal and Wage Policy – CSocD57 Side Event

Go to our website (apda.org.uk) to learn more about our culturally sensitive services.

Blog: Centre for Welfare Reform, On Not Being Believed.

Wheelchair Vista on the lasting effects of being doubted

Many of us with long term conditions struggle to accept that we can no longer live life as we used to. It took me almost ten years.

I carried on working for longer than I should. A resident at the care home I managed said; “It’s doing you no good keeping on working. Why don’t you reduce your hours or stop altogether?” She saw that I could not stand for long without leaning against a wall. Staff noticed that I always relied on the lift and was often in urgent need of the loo.

When I had time off work for minor surgery it had to be extended due to massive bruising sustained in a car crash. This was soon followed by investigations for IBS and a referral for knee surgery, which culminated in my employment contract being ended.

After numerous consultations with specialists, who were honest with me about the available treatments, I understood that my body was no longer going to function as it had. Nonetheless I was listened to, given choices and, most importantly, believed.

I hated not working and hoped to return, however a bad reaction to chemotherapy treatment for cancer led to severely reduced lung function and worsened fatigue. Finally, I accepted that I would never work full time again.

My children and then-partner were supportive. We discussed the possibility of a lung transplant but the consultant made the decision for me: a transplant was not appropriate. I was fine with that, having already adjusted to using a mobility scooter to get around. Then my relationship ended and I struggled with daily chores – I was permanently exhausted and out of breath. Upon asking social services to increase my care package I had my first experience of being disbelieved.

My original care package during cancer treatment was awarded swiftly and I expected a similar process – I was in for a shock. The social worker’s premise was that because I was still seeing consultants and surgeons that there must be something more they could do. Despite explaining that a lung transplant had been ruled out she insisted upon another referral.

Not being believed had a profound effect. Despite my background as a Clinical Nurse Specialist I began querying both my diagnosis and clinicians’ decisions. Instead of being secure in my choices I felt unsettled and confused. Maybe I hadn’t followed through on some possible options? Talking to nurses with the same expertise as myself, I asked ‘Should I have a transplant?’. All confirmed that both age and the complexities of my other health conditions excluded surgery.

Deep down I knew they were right, yet I was being pushed into checking and double-checking. I still feel the emotional pain this confusion caused. Why couldn’t this social worker understand? Eventually a strong letter from my Respiratory Consultant stopped the bullying but I was left traumatised.

Other incidents with the same social worker triggered a formal complaint. When allocated a new social worker the enhanced care package I needed quickly followed. The relief was enormous and my quality of life improved substantially.

“…disabled people’s need for social care puts us in a dependent position. The choice we face is stark: seek support and risk being discredited or carry on as usual and struggle with limited life choices.”

Eventually increasing back pain meant I could no longer comfortably use my scooter. Fortunately I got a grant to buy an electric wheelchair, however my flat was not wheelchair accessible. The wheelchair lived in the car and had to be dismantled and brought inside for charging. My need for an accessible flat was greater than ever, however I had already been on the waiting list for eight years. None of the properties viewed during this time were wheelchair accessible.

By chance I was offered a perfect flat, although in different London borough. The Care Act dictated that my care package should move with me so I had no reason to worry. However, securing the care package became a dystopian nightmare. The new borough required confirmation of my circumstances from consultants who no longer cared for me! Most of the surgery undergone during my initial time off work was done privately; some treatment also took place when I lived in the US – I don’t have the money to access the information they require.

A referral to another Respiratory Consultant led to me being discharged, as I don’t qualify for continuous oxygen – the one treatment that might reduce my breathlessness. The social worker’s response: “We may not be able to accept that.” I’m back in the trauma of not being believed. Each social worker visit left me more distressed.

My professional work has included being an Expert Witness in several court cases – I’m used to being believed and respected. Finding myself in a parallel universe where my skills and knowledge are disregarded is frightening.

Relationships are based on honesty and trust. In most cases we choose who to have relationships with, but disabled people’s need for social care puts us in a dependent position. The choice we face is stark: seek support and risk being discredited or carry on as usual and struggle with limited life choices.

Asking for care creates uncertainty. The imbalance of power can lead to abuse of process and of the relationship between social worker and client – we have little say in the process. My personal experience of two different London boroughs is borne out by conversations with other disabled people – being disbelieved is sadly all too common. Being doubted causes mistrust in what our body is telling us; this is dangerous. My first sceptical social worker caused emotional strain that worsened my IBS and I lost a great deal of weight.

Within three years of leaving work I was prescribed morphine patches for pain. Scans showed the consultant how damaged my spine was – he never once questioned the severity of my pain. Three months later I was discharged from his clinic, feeling validated and with my pain well managed. This is how good medicine is practised. During nursing training we were taught: ‘Pain is what the patient says it is, where they say it is and how severe they tell you it is.’ I followed this mantra everyday in my nursing practice; it is patient focused, ensuring that nurses listen and act accordingly.

What has happened to that level of compassion in social work? I have been forced to argue my case against someone without the clinical skills or qualifications to understand my condition. They don’t inhabit my body; they don’t feel the pins and needles in my hands that prevent me from gripping things properly. They don’t have 40% lung function and don’t know what it’s like to feel constantly fatigued. They are NOT me.

Whenever I’m disbelieved, personal doubt resurfaces. Fortunately I have learned enough therapy techniques to stop the broken record and my friends support me against the onslaught of cynicism – I’m able to remain reasonably balanced. Yet a friend in similar circumstances copes by self-harming and many others drink to blot out the disbelief.

Managing the rejection of my true life situation has left me exhausted. The unnecessary trauma has made me increasingly angry. A benefits system that constantly questions someone’s fitness for work, disregarding incurable conditions, is an outrage. The power that social workers have over disabled people’s lives is insufferable. A government that believes in austerity and cutting services is inhumane.

There is a better way. Trust disabled people to know their own bodies and what support they need. Belief should be the default position unless contradicted by evidence. We need a National Independent Living Fund linked to Support Money (benefits) by a Holistic Assessment. Combine ESA with PIP/DLA so that those awarded the highest support are automatically granted a number of social care hours per week.

Such reform would provide disabled people with a guaranteed level of care. It would promote dignity and permit disabled people to have a greater level of choice in their lives. How this would work is another post entirely.

Wheelchair Vista, is a blogger and disability activist. She writes about her life and issues that affect disabled people. She also tries to pass on some of the knowledge she’s gained along her journey.  Read WheelchairVista’s blog here.

For further information about the Chronic Illness Inclusion Project from Centre for welfare Reform, Please click here

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Did you know that DRILL is the world's first major research programme led by disabled people? Projects with @DisRightsUK, @DisabilityWales, @InclusionScot & @disabilityni have already identified approaches to enable disabled people to live independently. https://t.co/fiDKylG6Vy

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