Tag Archives: Luke Clements

Delivering legal rights through practical problem-solving

In this article we take a look at our Legal Entitlements and Problem-Solving (LEaP) Project – why we started it, what we do, what we’ve achieved so far and the longer term impact of our work.

Why we started the Project

Disabled children and their families sometimes need extra support in order to have a normal everyday life – for example, help with bathing or eating, moving around or communicating. Local councils and the NHS have legal duties to meet these needs by providing support, such as someone to help with personal care at home, specialist equipment, adaptations, short breaks or therapy services. However, we know from our work with families that, in practice, parents often struggle to get the right support for their children and a lack of support can harm the health and well-being of the whole family.

The LEaP Project aims to find out why families struggle to get the help that they’re legally entitled to and what can be done to change things. We want to learn more about the problems families face, so that we can work out ways of overcoming them and helping families to get the support they need. The Project is led by Luke Clements, Professor of Law and Social Justice at the University of Leeds.

What we do

We invite families to tell us about the problems they face in getting the support they need. With expert support from the team at the University, we provide legal information and advice to help families overcome those difficulties. We help families to understand what their legal rights are and what they can do if they fail to get the support they need. We also use the information we get from individual cases to write template letters, factsheets and guides, which can help other families in similar situations.

When we see from our casework that several families are having similar problems, we ask our student volunteers at Leeds to study this problem in more detail (often by doing a survey) and then produce a report with ideas about how policy and practice can be changed to avoid these problems in the future.  Past projects have looked at short breaks, school transport and disabled facilities grants.

Then we use the knowledge gained from our advice casework and student-led projects to improve our understanding of why these legal problems occur and to work out practical ways of overcoming them. We want to find out which problem-solving techniques help families to cope better with the challenges they face and how councils and the NHS can change the way they work.

What we’ve achieved so far

(1)  We’ve attracted funding from the Economic and Social Research Council and from Leeds University, which has enabled us to fund a PhD student, develop our Problem-Solving Toolkit (see below) and fund a research assistant post at the University.

(2)  In 2013 and 2014, we published compilations of our advice letters (the ‘Digests of Opinions’) to help other families in similar situations.

(3)  In 2016, we published a report about ‘short breaks statements’ (these statements are published by councils in England and explain how families can get breaks from their caring responsibilities). The report considered how accessible and accurate these statements were.

(4)  We published a guide for families in 2016 called the “Accessing Public Services Toolkit”. The Toolkit describes some of the common problems families face in dealing with councils and the NHS and suggests ways of solving those problems. A second edition was published in 2017, along with a separate version for families in Scotland. We’ve developed an ongoing programme of workshops across the U.K. to share the Toolkit with parent groups.

(5)  In 2017, the student volunteers at Leeds interviewed a small number of families who had applied for a disabled facilities grant to pay for home adaptations. We published a report called “Disabled Children and the Cost Effectiveness of Home Adaptations and Disabled Facilities Grants”, which considered the benefits of investing in these adaptations, including cost savings and improvements in families’ well-being. The report was launched at a conference at the University of Leeds on 12 July 2017 and resulted in meetings with senior members of Leeds City Council, the NHS Leeds Clinical Commissioning Group Partnership and Foundations (the national body for Home Improvement Agencies), along with an article in the Guardian newspaper.

(6)  On 12 July 2017, the Project Team also launched a research report called “Local Authority Home to School Online Transport Policies: Accessibility and Accuracy”. This report explains how difficult it is for families to find accurate information about school transport on council websites and how some transport policies are more restrictive than they should be. As a result of the report, the team met with representatives from the Department of Education and worked with the charity, Contact, on their inquiry into school transport, including giving evidence to a select committee at Parliament. The Department for Education has decided to review its guidance for councils on school transport and it is planning to produce an accessible template for council websites, so that school transport information is more easily available to families. The team has been asked to share its research data with the Department to help with this work.

(7)  As a result of our casework, the Welsh Government has agreed to make its guidance on continence products more clear, so that families are no longer told that they can only have a maximum of 4 products a day.

(8)  We’ve helped families in England and Wales get the services they need – and persuaded councils to change their policies so that other families aren’t disadvantaged. We’ve built on our casework by publishing parent guides, for example on school transport for England and Wales, so that we can share the lessons we’ve learned with many more families. We’ve also published a series of template letters and factsheets for parents to use.

Longer term impact of our research

We know that our work with families helps them to develop the knowledge, confidence and skills they need to get support:

  • “Thank you for all your help and support. I don’t think I would have got anywhere without it.”
  • “We appreciate the continued support to empower us to go through this process.”
  • “I really do appreciate your support. I hadn’t realised there was so much info available to research.”

We will continue to support families and draw on their experiences to help us plan our research and publish resources which help other families in similar situations.

In 2018, our student volunteers will look at three research topics – how difficult it is to apply for a disabled facilities grant, how well the direct payments system works for disabled people and what social care charges disabled people have to pay for their care costs.

We also want to investigate how policies and practices within councils and the NHS can sometimes make it more difficult for families to get the support that they’re entitled to. We’re developing a detailed research plan, which will involve working with councils and the NHS to explore why these barriers exist and what can be done to remove them. We hope to get grant funding in 2018 for this important study, so that we can help to introduce changes within these organisations which will make it easier for more families to get the support they need.

You can find out more about our LEaP project here.

Luke Clements: How I Became Involved in Research and What I Hope to Achieve

Professor Luke Clements is Cerebra Professor of Law and Social Justice at the School of Law, Leeds University. He explains how he became involved in research and what he hopes to achieve.

“I came to academic research relatively late in my career.  Initially I was a full time practising solicitor specialising in what is known as ‘public law’: claims against public bodies.

I realised however that winning cases did not necessary make public bodies change the way they behaved: quite often it made them more defensive.  Only a few people were able to take court cases as legal aid was often difficult to obtain. Even with support, challenging public bodies can be a dispiriting, exhausting and intimidating experience.

This realisation is why I became involved in research.  I was fortunate to get a post at Warwick University, then at Cardiff and I am now at Leeds.  For the last 20 years my research focus has concerned the law relating to the social care rights of disabled people and their carers.  During this period it has been accepted that social care law needed to be made more accessible.  This has recently resulted in reform legislation in England and Wales – for which I acted as the special adviser to the Westminster Parliament.

Streamlining the law is welcome but in itself insufficient to enable all disabled people and their carers to access their entitlements.  Public bodies face many competing demands and this can pose enormous problems for individuals with limited resources who are not familiar with the system.  What is needed are mechanisms that help families overcome these barriers.

Cerebra had also recognised this important need and in 2013 I was honoured to be awarded a Cerebra Research Chair to take this work forward.

The LEaP Project

Our programme, known as the ‘Legal Entitlements and Problem-Solving (LEaP) Project’ has two intertwined elements – both involving a high level of collaboration between the University and the Cerebra in-house research team.

Legal advice scheme

The first element is a practical legal advice scheme for families who are having difficulty accessing health, social care or other support services.  Requests are received and assessed by Cerebra staff and those cases which meet our eligibility criteria are referred to the Project Team for consideration.

In the second element of the LEaP Project we analyse the information generated by the legal advice scheme to help identify commonly occurring problems and practical mechanisms that can help families overcome these.  This research takes us in many directions.  One of these involves the use of ‘pro bono students’ to prepare reports on specific ‘commonly occurring’ themes and another concerns expert input from our Family Research Ambassadors.

Pro bono Student support

Universities have many excellent resources – not least their students.  With the cutbacks in legal aid and other advice agencies, many Law Schools are developing ‘law clinics’ that try to address these difficulties.  Cardiff Law School (where the research centre was formerly based) and Leeds have two exceptional pro bono law student programmes (pro bono is the fancy legal term for ‘free’!).

In the past few years our students have provided legal opinions on a wide variety of issues of central concern to families and these are published in the Digest of Opinions. This aspect of the programme is now focussing on systemic problems identified by the LEaP legal advice work (above).  Most recently this resulted in a report on the quality of ‘short breaks’ support in England and in the coming years we plan to research difficulties obtaining ‘Disabled Facilities Grants’, problems with school transport arrangements and the delay many families experience in obtaining a diagnosis when it is suspected their child may have autism or similar impairment.  This work feeds into our underpinning research (below) and also identifies areas where there is a need for an advice guide.

Family Research Ambassadors (FRA) Scheme

To understand ‘what works’ in relation to ‘problem solving’, families of disabled children are the best people to ask. Many have become experts in navigating the bureaucratic maze and scaling the administrative hurdles.  The FRA Scheme (first developed by our Cerebra Chair colleague Professor Richard Hastings at Warwick) brings together such experts by experience and with their help develops ‘problem solving’ tools (such as the ‘Toolkit‘).  The FRA members then disseminate the problem-solving expertise through regional training programmes, seminars, presentations etc.

We have just completed a very successful FRA scheme in the Bristol / South Wales region and with Cerebra we are seeking additional external funding to develop similar schemes in every region of the UK – so if you are able to help with this in any way – please let us know.

The underpinning research

Underpinning all these activities, the research at Leeds seeks to:

  • identify the key factors that build resilience – enabling families to continue until they have obtained the support they and their children need
  • identify the most effective mechanisms for resolving commonly occurring problems.

As part of his PhD research, my colleague Derek Tilley is undertaking empirical research on this question: pulling together the relevant data and experiences of the advice, pro bono and FRA programmes.

This is the most exciting, engaging and practical research with which I have been involved.  It is research that is having a direct effect – improving the lives of many families and also, through a constructive dialogue with the hard pressed public bodies, making significant changes to their practices”.

University of Leeds Launches Disability law Hub

The University of Leeds is set to be a leader in the field of disability law with the launch of a Disability Law
Hub.

With more than one billion disabled people worldwide facing possible discrimination and exclusion, the
new hub will be dedicated to research on disability law, as well as offering a wide range of teaching
expertise at undergraduate, Masters and doctoral levels.

Specialist areas include mental health and capacity law, disability equality law, care law, international disability rights law, disabled victims of crime, and the relationship between disability and areas of law such as contracts, torts and intellectual property.

Forming one of the largest groups of disability law scholars in the world, the hub will be headed by
Professor Anna Lawson and will comprise nine legal academics and several PhD researchers.

At the launch event at the university on 15 April, Professor Anna Lawson, who is herself blind, said: “I
studied law at the University of Leeds in the 1980s because it was the only university that offered a
transcription service for blind students. Thirty years later, I am proud that my alma mater has taken a
leadership role in recognising disability law as an important area of legal research and scholarship and very
excited about working with my wonderful colleagues in this area.”

Professor Sir Alan Langlands, Vice-Chancellor of the University of Leeds, said the new hub builds on a
strong track record in disability studies at the university. He said: “For many decades the University’s
Centre for Disability Studies has challenged socially-created barriers that limit the life chances of disabled
people. The new Disability Law Hub houses the country’s leading group of legal experts in this cutting edge
field”

Two new Professors of Law and Social Justice have recently joined the School of Law and become members
of the hub. Luke Clements is an expert on social care law whose Chair is endowed by the charity Cerebra.
He is a practicing solicitor who has taken many of the landmark discrimination cases to the European Court
of Human Rights.

Oliver Lewis joins the School of Law while retaining his position as Executive Director of
an international human rights charity, the Mental Disability Advocacy Centre. He has worked in some 20
countries in Europe and Africa on strategic litigation and advocacy which advances equality, inclusion and
justice for people with mental health issues and learning disabilities.

Cord Cohn Low, Chair of the School of Law’s Advisory Board has said “When I taught law at the University
of Leeds in the 1970s and early 1980s I did not imagine that the School of Law would one day establish a
Disability Law Hub. I am delighted that its scholars have a range and depth of expertise that will be
invaluable in closing the gap between the rhetoric of human rights and the lived experiences of disabled
people around the world.”

Professor Alastair Mullis, Head of the School of Law, added: “I am immensely proud that the new
Disability Law Hub will offer undergraduate and postgraduate students an opportunity to engage with
legal theory and practice so as to improve access to justice for disabled people, who have languished on
the edges of the margins of law for tar too long.”

Cerebra is happy to share this press release which was issued by the University of Leeds.

You can find our more about the Law Hub here.

 

Problem-Solving Toolkit for Families

Cerebra has published a new Problem-Solving Toolkit to support disabled people and carers who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services.

Research conducted by the charity and Cardiff Law School in October 2015 revealed that families of disabled children are experiencing substantial delays in getting an NHS diagnosis and too few parents are being given written information when they do receive their diagnosis. Support services are not always offered and, when they are, they often do not meet the needs of the family. Moreover parents are reluctant to complain about any of this and, if they do, their concerns are often not dealt with adequately.

Whilst UK law provides powerful rights to such support services, this alone can be insufficient. Professor Luke Clements, Cerebra Professor of Law and Social Justice, Leeds Law School and author of the Toolkit explains: “The law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials. There is a power imbalance and much research suggests (and indeed the Government accepts) that many families are fearful that complaining may make things worse”.

The Toolkit is a comprehensive, practical and easy to use guide to help families resolve difficulties with their statutory health, social care and education support services. It aims to help unpick commonly experienced problems and to offer effective strategies for resolving them. The Toolkit:

• considers nine general categories of dispute, from inter-agency disputes and complex cases to delays and resource issues, and offers detailed advice for resolving them
• identifies key factors that can empower people to claim their rights and to challenge failures when they occur
• offers advice on preparing for, attending and following up on meetings
• sets out a series of template letters that families can use in a variety of situations

It also provides a Jargon Buster, an explanation of what public authorities must do and explores a number of commonly held myths.

To accompany the Toolkit a central website, www.difficultbox.com, is being developed with links to law, practice and self-help guides that have been produced by many charities and support organisations. The facility to post comments and suggestions on the site is being developed.

The Problem-Solving Toolkit is free to download here.

The publication of the Toolkit has been made possible by a 2015 Economic and Social Research Council (ESRC) ‘Impact’ award in addition to financial support from Cerebra.