Upholding the independence of disabled parents: Re-imagining Children’s Services in co-production with disabled parents and professionals

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The large research project is about working in co-production with disabled parents to develop solutions that aim to keep families together through independent living. The project partners are individual disabled parents and co-researchers working in partnership with the University of Bedfordshire.

Disabled parents approached the University of Bedfordshire for help and support with children’s services issues. This led to the university to co-establish a Tilda Goldberg Centre disabled parents’ network, facilitated by a disabled academic. Together this network have co-designed this research project to answer questions that are important to disabled parents.

The Upholding the independent of disabled parents project will challenge previous studies that have tended to: assume a correlation between parental impairment and a negative impact on children’s well-being; see impairments as the only and most relevant variable of interest; that make recommendations which have focused on direct interventions involving children.

By re-imagining children’s service the project will:

  • problematise the assumption that having the an impairment necessarily impacts on the ability to care for child
  • use the Social Model of Disability to move from talking about impairments and onto disabling barriers
  • develop solutions that keeps families together

Rate it! Consumer product reviews by disabled people

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The 2 year pilot project will be coproduced by 3 disability led organisations – Research Institute for Consumer Affairs (RICA), Leicestershire Centre for Integrated Living (LCiL) and Enabled by Design.  Which? will advise the project.

The product review website will:

  • Assist disabled consumers to make informed choices about products that support their independent living – the project aims to reach 500,000 disabled users
  • Build greater industry awareness of the disabled consumer market – reviews will serve to build retailer and manufacturers’ understanding of disabled customers’ needs and experiences.

There is no well-established, pan-disability UK review website dedicated to both mainstream and specialist disability related products.

The Extra Costs Commission final report identified that:

‘49% of disabled people feel they only have some of the information they want when buying online or in-store’

‘Over 90% favour the idea of an online community where disabled people could share reviews’

‘Rate it!’ will benefit disabled people from a wide range of physical or mental impairments or long-term health conditions. The pilot project will be peer reviewed by 3 disability led organisations – Scope, Business Disability Forum and AbilityNet.

Tackling violence and abuse against disabled women in coproduction with mental health, social care and housing services

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The research project will involve disabled women aged 16 and over who are survivors of violence and abuse across England and Wales.

The purpose of the research is to evidence the following – What do disabled women want from services to help them stay safe in the medium and longer term after violence and abuse?  What can service providers learn from serious case investigations to prevent violence and abuse?  How can mental health, social care and housing providers improve longer term services for disabled women?  How can services work together to create safer and more inclusive communities for disabled women 16 years and over?

The project will be coproduced in partnership with Vision Sense, Against Violence and Abuse and the Centre for Disability Research (Lancaster University).

Peer support in progress: what works best to make peer support projects successful

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The project will research how peer support workers experience their work within organisations, identifying both good practice and opportunities for improvement.  This will provide evidence-based recommendations as to how peer support can best be supported.  Different types of organisations will learn from each other and adapt and adopt good practice.  The findings will be promoted to encourage the adoption of peer support and encourage cultures within services to facilitate mutual, strength focused ways of working to enable more disabled people to have employment opportunities.

The 6 month project will be coproduced by Inclusion Barnett, Inclusion London, Nottinghamshire Healthcare NHS Foundation Trust, Real Lives and Barnet Voice for Mental Health.

Research Report

On Thursday 8th February, Inclusion Barnet launched their DRILL funded research report on peer support. The report explores what peer support is, how to make it work and makes recommendations for practice. The report finds that in order to be effective, the implementation of peer support must be accompanied by an understanding of how the values of peer support can be embedded within services.

 

Peer support is a fast-moving global trend in mental health service delivery; the numbers of people who have experienced, and learned to manage their own mental health difficulties, being employed to support others facing similar struggles, grows year on year. Yet, peer support remains a controversial and contested practice. It has often fallen foul of those who are suspicious of a trend which places value on “lived experience” rather than professional qualifications and attaches value, rather than stigma, to the experience of mental-ill health. Even those who advocate for its efficacy agree that its specific benefits are difficult to identify and describe, let alone deliver and quantify.

 

The report is based in a qualitative study, using interviews with 36 peer support workers and their colleagues from all over the country and from different sectors. It includes a thoughtful exploration of what peer support is and the benefits of using lived experience in service delivery. It also includes clear recommendations for the implementation of peer support within organisations: including strategic planning, recruitment and supervision.

 

The resulting research sheds new light on what is valuable about peer support and how it can be implemented as an effective form of practice. It shows that embedding a ‘counter culture’ of practice such as peer support within traditional statutory organisations requires skill and strategic planning, as well as an understanding of how to translate the values of peer support into everyday practice interactions. It lays out the blue-prints for implementing effective peer support for organisations that are new to peer support or are struggling to get it right.

 

Humare Avaaz (Our Voice) – exploring the experiences and barriers faced by disabled Asian Women

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Humare Avaaz (Our Voice) will focus on Asian women whose disability falls into one or more of the following broad categories:  physical disability; learning disability or mental health or long-term health condition (as a result of their status, for example, an unpaid and unsupported carer.)  The life experiences and views of a representative population of disabled Asian women from different communities will be gathered.  The project will concentrate on documenting positive outcomes and successful stories where Asian women have overcome barriers and whose experiential knowledge will offer lessons or suggestions for changes to social policy.

The 15 month project will be coproduced by Asian People’s Disability Alliance (APDA), Apna Ghar and the Brent Indian Association.

Co-producing an inclusively designed exhibition with partially sighted, blind and elderly participants

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The research project aims to challenge the traditional boundaries of the researched and the researcher.  People who are blind or visually impaired will be involved as equal partners, ensuring the project is jointly initiated, developed, implemented, evaluated and publicised.  The project focuses on ‘intellectual access’ for people with sight loss visiting local galleries and museums through the inclusive design and curatorship of exhibitions.

The research aims to add ‘real-world research’ guidance on how galleries and museums can effectively respond to impromptu visits from people who have sight loss, thus support independent living.  Additionally the coproduced process aims to bring greater understanding of how to build collaborations between venues and disabled visitors.

The 1 year project will be coproduced by the University of Lincoln, National Centre for Craft and Design, RNIB Regional Centre (Midlands) and AgeUK (Lincoln).

Chronic Illness Inclusion Project – mobilising a collective voice for social change

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 Published Tuesday 28th April 2020

The project will promote the framework of independent living among the chronic illness community and provide them with tools for greater autonomy and dignity. The project will explore technological solutions to participation barriers of people with chronic illness who face such barriers in traditional Disabled People Organisations as well as civic life more generally.

The project will learn from existing online communities and activists’ networks e.g. Broken Britain and Spartacus and will disseminate the knowledge they contain to a wider audience through the outputs of a manifesto and reports.

The project will be coproduced in partnership with the Centre for Welfare Reform, researchers Catherine Hale, Jenny Lyus and an expert committee of individuals whose participation in traditional organisations or academia is highly restricted by severe chronic illness.

Find out more

The Chronic Illness Inclusion Project is an ongoing project. To view their latest research or to sign up, please visit their website: https://inclusionproject.org.uk/

Supported Decision Making – experiences, approaches and preferences

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‘Supported decision making’ is a project researching the experiences of disabled people with mental health and learning difficulties, of decision making processes.

The project partners are PRAXIS Care, Queen’s University Belfast, Mencap and an international advisory group. Peer researchers, supported by Mencap and PRAXIS Care, will be part of the research team. The coproduced research is of immediate and direct relevance to the Code of Practice and implementation of the Mental Capacity Act (NI) 2016. The Act is world leading, and when implemented, will have relevance across the UK and internationally.

The project will:

  • look for solutions that empower disabled people to directly influence decisions about daily life to major life decisions
  • use the coproduced solutions to directly inform the Codes of Practice that define how the support principle of the Mental Capacity Act (NI) 2016 will be implemented in practice.

A translational case study of empowerment in practice: an evaluation of the Dementia NI Service

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This research project will evaluate the Dementia NI Service. Dementia NI was set up by five people with dementia in 2015 to provide an independent voice for people with dementia. Aims include people with dementia actively raising awareness, challenging the stigma of having a diagnosis and influencing decisions about dementia care, policy and services in Northern Ireland.

The evaluation will explore the impact of involvement with Dementia NI at individual, dementia community and society levels. This will include looking at what empowerment means to people living with dementia and how this can be enabled through the organisation.

A realist methodology will be used to help understand what works well about the organisation’s programmes, for who and in which situations. This will involve development of programme theory through review of the service’s theories of empowerment; interviews with members and staff in Dementia NI; observations of empowerment groups and other member activities; and document review in order to profile contacts, pathways, networks and their involvement. Members will be involved in the

interpretation and analysis of this data to help refine the programme theory of the service. The review will further aim to build capacity of Dementia NI to recognise and measure the impact of their services.

The 16 month project, started in February 2017, will be coproduced by Dementia NI, Queens University Belfast and Ulster University.

Legally disabled? The career experiences of disabled people in the legal profession in England & Wales: developing future strategies

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This project is based in Wales and England. This is a large research project and will be coproduced in partnership with Cardiff University’s Business School, the Lawyers for Disability Division, the Law Society, the Bar Council and the major City law firm Hogan Lovells as well as input from Natasha Hirst and Graham Findlay (independent researchers). The core research team are disabled people with experience of academia or working in DPOs.

The research will explore 1) the barriers encountered by disabled people in gaining professional employment and career advancement in law, and 2) the ways in which such barriers can be circumvented and / or addressed.

Not enough is known about the experiences of disabled people employed in higher status professional occupations.  ‘Legally Disabled?’ will show aspiring disabled people what is possible, exposing existing barriers within the legal profession, and highlighting strategies for future inclusion.  This research will increase the visibility of disabled people in law and increase their influence on policy, promoting independent living for all.

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