Mutual Benefits – The Potential of Disabled People as Foster Carers
There is a huge shortage of foster carers in England. We sought to find out why Disabled people are not being asked to help fill this recruitment gap of 8,500 people.
The University of Worcester worked alongside Shaping Our Lives Service User and Disabled Persons’ Network and the Foster Care Co-operative agency to look in-depth at four fostering agencies in England. Training about disability awareness was provided by Becki Meakin from Shaping Our Lives. Participants felt it helped them change attitudes and practice in their workplace and made them more confident about working with Disabled people – looking at what they have to offer, rather than what they can’t do.
Many barriers were found, even though many Disabled people have their own children and have a wide range of life skills. These included discriminatory attitudes held by professionals; a lack of clarity about medical fitness; a lack of role models; and uncertainty around benefits eligibility. The central role of medical assessments in the application process was also found to present a significant impediment for Disabled people seeking to foster, often being based on a medical rather than a social model of disability.
We have found it very challenging to get many fostering agencies and Disabled people’s organisations interested in this project which we see as a ‘win-win’ opportunity. Disabled people will be able to step into employment, children needing care will have a greater choice of placement and the recruitment gap will be greatly reduced.
The research found that agencies are doing little to encourage Disabled people to apply to foster. Disabled people faced unnecessary barriers – such as inaccessible buildings, information systems and support structures – that could be easily addressed at little or no cost. Foster agency websites do not often mention Disabled foster parents and rarely have positive images of Disabled foster parents.
The research team made good progress across the four research sites, and interviewed twelve Disabled foster carers who are living proof that Disabled people can successfully foster. A majority of these had been previously rejected by fostering agencies solely because of their having declared a disability, and often no assessment was even made. Alison said: “… as a Disabled foster carer, I would have never expected to be matched with a child with complex needs. I expected to maybe have to wait a while for a placement and to only take easy placements maybe, but my agency haven’t been like that at all, which is again a credit to them”
If you’d like to hear more from Alison, you can listen to her interview on BBC Radio 4’s Woman’s Hour earlier this month.
Jon said:
“I have two children living with me since they were very young and they just see Disabled people as people. This is what inclusion brings – natural equality.”
It is hoped that dissemination of the project’s findings and highlighting success stories such as Alison’s and Jon’s will encourage both fostering agencies and Disabled people to embrace the great potential in Disabled people as foster carers.
The University of Worcester is seeking new funding to continue the project on a wider scale, planning further training for foster agencies and has written a practice guide about Disabled foster carers.
You can download a copy of the report here.
Dr Peter Unwin is principle lecturer of social work at the University of Worcester and lead author of ‘Mutual Benefits – The Potential of Disabled People as Foster Carers’.
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Blog: Supporting people with learning disabilities to have positive sexual relationships
By Anna Marriott, Research and Evaluation programme Lead at NDTi
People with learning disabilities want to love and be loved.
This is simply stating the obvious, and we shouldn’t need research to tell us this. However, the National Development Team for Inclusion (NDTi) has been working in partnership with My Life My Choice to explore exactly this topic. We have been researching this because self-advocates at My Life My Choice told us lack of support for sexual relationships for people with learning disabilities is an important issue that needs addressing. This research was funded by the Disability Research on Independent Living and Learning programme, which is funded by the National Lottery Community Fund. This has been a co-produced piece of research, meaning that the original research idea and grant application was planned with people with learning disabilities and self-advocates who worked in partnership with NDTi researchers in terms of designing the study, collecting and analysing the data.
Good quality relationships with partners and friends are important for our health, wellbeing and happiness. They can help protect us physically and emotionally and can bring meaning to our lives. This applies to people with learning disabilities as much as anyone else.
People with learning disabilities have the right to relationships. There isn’t a debate about that. They have the right to respect for private and family life (article 8, Human Rights Act 1998) and participation in the life of the community, as guaranteed by the UN Disability Rights Convention 2006. More recent legislation such as the Care Act 2014 is explicit that local authorities have a duty to promote wellbeing when making decisions about someone or planning services. Personal relationships are one of the nine areas considered as important elements of wellbeing.
So, we don’t need new laws to give people with learning disabilities the right to have a sexual relationship. They already have this right in principle. But there seem to be challenges when it comes to putting rights into practice. When speaking with people for our research, we were repeatedly given examples of ways in which they are treated that ignore their rights. Charlene told us ‘I’ve got a boyfriend, but the staff won’t let me give him a cuddle or a kiss’. Charlene has capacity to take that decision for herself and no-one has the right to tell her otherwise. But they do.
Consent to sexual relationships is an ‘exempted’ decision under the Mental Capacity Act 2005. There are no ‘best interest decisions’ around sexual relationships. So, if someone does not have capacity to consent to a sexual relationship’ then no-one can take this decision on their behalf. This doesn’t seem a radical statement – who would argue that someone should be forced into a sexual relationship/marriage if they don’t have capacity to choose this? However, somehow it appears to be acceptable that someone with capacity, who is choosing to have a sexual relationship, is denied the right.
Why do we have an issue with people with learning disabilities having sexual needs and desires? In the media we are bombarded with messages about love, sex and happy families. When scrolling through the news, adverts pop up telling you how ‘you too can meet someone special’ and increasingly love is recognised in different ways. Yet still people with disabilities are almost invisible in these images of love and sexuality. Why is it so different for them? Do we as people who support them still see this as a lower priority? Why is it more important that someone gets training to teach them how to use a bus than having someone to hold hands with on their bus journey? If we think the need for love is part of being human, what does this say about how we see people with learning disabilities?
We concluded in our research that people with learning disabilities need to understand their right to have relationships, but they also need the skills and confidence to be able to challenge situations where they rights are being denied. Commissioners have a role to play in ensuring services are respecting and protecting people’s rights. Providers should recognise their legal duties under the Human Rights Act 1998, which includes respecting and facilitating people’s decisions. In regard to rights around sexual relationships, services need to have clear, explicit organisational policies and to provide appropriate training for frontline social care staff.
We hope that the Research in Practice for Adults Webinar will help staff to understand why people with learning disabilities may need specific support around sexual relationships and give ideas on the best way to support people to enable them to fulfil their wishes to have relationships.
About the author
Anna Marriott is Research and Evaluation programme Lead at NDTi. Her primary area of research and recent work has been around health inequalities for people with learning disabilities. This has included a focus on the wider social determinants of health, such as social networks and housing, as well as work around access to healthcare for people.
Thank you to Research in Practice for Adults for allowing us to share this article.
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News: “Is it Me?: How do attitudes within the social care system impact up on independent living choices.”
Darlene Corry from Disability Action NI is talking about her research “Is it Me?: How do attitudes within the social care system impact up on independent living choices.” She is joined by one of the research partners, Paul Rooney from the Northern Ireland Social Care Council.
This important piece of research tackles two major issues head on – attitudes, which significantly impact on disabled people’s daily lives; and adult social care, which exists to support people to live as independently as possible. What happens in practice is what this research is gathering.
This research will explore what attitudes and behaviours disabled people are experiencing from social care staff as well as from the policies and practices in place within the social care system, as well as what impacts these attitudes have, positive or negative, on disabled peoples’ lived experiences of independent living. The voices of social care workers and social workers will also give context to the challenges and supports they face in their work. Is it Me? will provide key findings about what is working well and should be supported, and what is not working well and needs to be addressed, alongside evidence based recommendations for change.
The hope is for this research to become a useful tool for disabled people, their allies and organisations, social care workers and managers, policy and decision makers and others to improve attitudes within the social care system; and to improve how disabled people rights’ for choice and control over their independent living can be more effectively met.
The research data has now been gathered – this includes:
- 4 focus groups with disabled people, and 1 focus group with social care managers
- 15 interviews with disabled people
- 552 responses to an online survey by social care workers and social workers
This research is being analysed and written up now. The co-production research partnership, led by disabled people, has been working closely with the researcher from the outset of this project to co-produce this report. We are looking to get the report out for the end of October / beginning of November.
This research project is is one of 32 UK wide pieces of research co-produced by disabled people is funded by DRILL – the biggest programme in the world of research led by disabled people. It is supported by a co-production research partnership, made up of disability rights activists and academics who have been working closely with the researcher from the outset of this project to co-produce this report. The other partner for this piece of research is the DRILL National Advisory Group, supporting the five pieces of DRILL research coming out of Northern Ireland.
Here is this tv interview link: about DRILL research in progress
To get in touch with the researcher, please contact:
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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/
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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/
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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.
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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.
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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
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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
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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.
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