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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.

Our LEaP project helps Rhiannon get the continence supplies she needs

Rhiannon

Rhiannon

Our LEaP Project helps Rhiannon get the continence supplies she needs and our template letter could help you to write to your local health board.

Our Legal Entitlements and Problem-Solving (LEaP) Project supports families who are struggling to get access to health or social care services. Louise contacted us for help with getting continence products for her daughter, Rhiannon, who’s 9 years old and has Wolf-Hirschorn syndrome. Louise and Rhiannon live in North Wales.

The local continence service had told Louise that it couldn’t supply more than 4 continence products per 24 hours, even though Rhiannon needed more because of her condition. Louise was also concerned about the quality of the nappies, as the adhesive fasteners seemed to be aggravating Rhiannon’s skin and would often break off. We told Louise about some guidance published by the Welsh Government , which describes the level of service that patients can expect to receive. This guidance says that the ‘4 a day’ maximum is just a general rule and that the actual number of products supplied will depend on a child’s individual needs. The guidance also says that families can ask for a re-assessment if their needs change. Louise took our advice and asked for a reassessment.

During our research into Louise’s problem, we noticed that another part of the guidance said that there was a strict limit of 4 pads per day and that families who needed more would be told to buy their own. We wrote to the Welsh Government’s Cabinet Secretary for Health to explain Louise’s situation and highlight the contradiction between the different parts of the guidance.

In response to our letter, the Welsh Government asked the local health board to address Louise’s concerns. It also agreed to update the guidance to make it clear that the number of nappies supplied should always meet a child’s assessed needs – in the meantime, it agreed to contact every health board in Wales to explain the guidance, so that other families weren’t told that they could only have 4 products a day.

The health board’s head of nursing contacted Louise and we’re pleased to report that Rhiannon is now getting the nappies that she needs. The local continence team has told Louise that it will review Rhiannon’s needs on a regular basis.

Do you live in Wales? Has your local continence team said that you can’t have more than 4 continence products a day, even if your child needs more? If so, use our template letter below to write to your local health board.

If you live in England and you’ve had similar problems to Louise, contact us at probono@cerebra.org.uk

 

Template letter to ask the local health board for more continence products to meet a disabled child’s needs.(this letter applies to Wales only):

Please change or delete the green text as appropriate.

Dear Sirs

Continence products for my [son/daughter][name]

My [son/daughter] [name] is [age] and s/he has [disability/condition].

I was recently told by [name of person] that [child’s name] is only entitled to a maximum of 4 continence products per 24 hours. However, [child’s name] needs more products than this because [explain why your child needs more because of their condition].

I recently read an article in Cerebra’s newsletter, which explained that the Welsh Government has published guidance called the “All Wales Children and Young People’s Continence Guidance and Care Pathway”. This guidance says that:

“the number of disposable products supplied per 24 hours will depend on the individual child or young person’s needs, but would normally not exceed 4 products per day without prior consultation with the Continence Service”

This means that whilst the health board can have a ‘general rule’ of 4 products per 24 hours, it should always supply enough products to meet a child’s assessed needs. I understand that the Welsh Government’s Chief Nursing Officer, Professor Jean White, is arranging a review of this guidance to make this meaning clear to all health boards.

As such, I am writing to ask the health board to:
– assess [child’s name]’s needs within [give a timescale you feel is reasonable], and
– provide a sufficient number of products to meet his/her assessed needs.

Yours faithfully

Your name

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”.