Tag Archives: legal entitlements and problem-solving project

The accessibility of Disabled Facilities Grant application forms

A survey has found that about half of local authorities in England do not make application forms freely available for home adaptation grants – known as Disabled Facilities Grants.

Key findings included:

  • The law imposes strict timescales for the processing Disabled Facilities Grants (DFGs) – but if local authorities withhold the application form, they can deny individuals their right to apply for a grant and stop the ‘clock ticking’ for the purposes of the statutory timescales.
  • As the research report notes, a failure to make forms available is not only frustrating the will of Parliament (para 5.02) it is also frustrating the will of the Government, which has increased significantly the relevant grant to local authorities for DFG awards (para 2.15-2.17);
  • Given the prevalence of the problem identified by the research it suggests that the Secretary of State for Housing, Communities and Local Government should use his powers to ensure that failing local authorities act in accordance with the law and relevant guidance (para 5.11).

The Research was funded by the disabled children’s charity Cerebra and undertaken by students at the School of Law, Leeds University under the supervision of Professor Luke Clements with support from the Access Committee for Leeds a Disabled People’s Organisation with national expertise in home adaptations.

Download the full report (PDF)

Last year a similar research project, concerning adaptations to family homes to accommodate the needs of young people with Autistic Spectrum Disorders suggested that adaptations of this kind were highly cost effective (that an investment in adaptations amounting to £300,000 had avoided social services expenditure of about £1.5 million – ie a five-fold return on the investment). You can read the 2017 report here.

Disability related expenditure and pets care costs

A survey has found that many disabled people are unable to afford to keep a pet dog or cat due to the impact of council charges made for their social care support.

A survey of 46 English social services authorities found that eight out of ten would not make allowances for pet care expenses ‘in any circumstances’ when calculating the charges disabled people were required to pay for their social care services.

Background

For many disabled people their pet is of incalculable importance to their sense of well-being. Many experience severe isolation and for many their pet is their main companion. The report outlines the evidence suggesting that pets can have profoundly beneficial impacts on key measures of well-being: physical, mental and emotional – as well as providing for many a sense of security.

This research appears to be the first concerning the impact of local authority social care charging on pet owning disabled people living in the community.

Findings include:

  • Despite the evidence concerning the generally positive impact of pet ownership on well-being and the many social policy references to pet ownership as a potentially innovative mechanism for addressing eligible social care outcomes for disabled people, no local authority had a written policy concerning the treatment of such expenditure (para 7.07).
  • Only five authorities (11% of the sample) indicated that such costs could be taken into account ‘in any circumstances’ – although on analysis it appears that nine (19%) would in fact be prepared to consider such costs ‘on a case by case’ basis (para 7.07).
  • Local authority charges that ignore pet care costs will subject disabled people to severe hardship. After paying their council’s social care charge, disabled adults under pension age are likely to be left with no more than £75.25 per week (and in some cases as little as £48.17) from which they are expected to pay for (among other things) their food, gas, water, electricity, telephone bills, travel costs, clothing, house repairs, equipment purchase, insurance expenses and recreational activities (para 4.04).

The research recommendations include that the Secretary of State for Health and Social Care require that where reasonable pet care costs be taken into account for charging purposes (by amending the list of items in the Statutory Guidance at Annex C para 40).

The Research was undertaken by students at the School of Law, Leeds University as part of the School’s Cerebra Legal Entitlements and Problem-Solving (LEaP) Project and pro bono programmes under the supervision of Professor Luke Clements and Sorcha McCormack.

Download the full report (PDF)

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

School Transport Report

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds have published a report about the accuracy and accessibility of school transport information on local authority websites in England.

The students looked at 71 websites and identified serious failings in the information provided to families.  Almost 40% of the websites failed to clearly explain the legal rights of children with special educational needs or disabilities to school transport. The report also highlights how some school transport policies are more restrictive than they should be (see the examples on page 12/13).

You can read the full report here.

If you have a school transport problem, our Parent Guide explains what you can do to solve it.

Disabled Facilities Grants

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Our student researchers at the School of Law, University of Leeds, have published a report on Disabled Facilities Grants and home adaptations.

Disabled children and their families are legally entitled to a grant to pay for necessary adaptations to their home to improve accessibility and independent enjoyment of their surroundings. These are known as Disabled Facilities Grants (DFGs) and are usually for sums up to £30,000. The main aim of our DFG Project is to assess the cost effectiveness of DFGs and the wider impact adaptations have on the disabled child and their families.

The latest report from the team considers the benefits of investing in home adaptations for disabled children, including cost savings and improvements in well-being.

You can read the full report here.

Social Care Guides – England and Wales

social care guidesOne of the results of devolution is that in a number of areas of the law England and Wales are developing different approaches – these are sometimes very different.

The law dealing with social care is no exception and both England and Wales have seen changes in this area in the recent past. The changes in Wales in particular are significant and social services teams are still getting to grips with implementing them.

We have therefore developed two guides on social care, one for England and one for Wales which explain the different systems.

We would particularly recommend them to anyone moving between the two countries.

New students join our LEaP Project

Group photo copyOur Legal Entitlements and Problem-Solving (LEaP) Project at the University of Leeds is committed to providing practical solutions to the legal problems families face. Our lead researchers at the School of Law, Professor Luke Clements and Sorcha McCormack, have been busy recruiting students at the University to work on two new projects:

The Cerebra School Transport Research Project

Disabled children who can’t reasonably be expected to walk to school because of their special educational needs, disability or mobility problems have a statutory right to transport. Although councils are under a legal duty to provide this assistance, LEaP is often contacted by families who have been improperly refused this support. The main aim of the School Transport Project is to assess whether the school transport information on English local authority websites is fit for purpose.

The Cerebra Disabled Facilities Grants Research Project (DFG Project)

Disabled children and their families are legally entitled to a grant to pay for necessary adaptations to their home to improve accessibility and independent enjoyment of their surroundings. These are known as Disabled Facilities Grants (DFGs) and are usually for sums up to £30,000. The main aim of the DFG Project is to assess the cost effectiveness of DFGs and the wider impact adaptations have on the disabled child and their families.

The LEaP project is all about making research relevant to families in their everyday lives and the students will be publishing reports on their research in the new year.

Full details of all the legal help available from Cerebra as well as details of the research programme at the School of Law can be found here.

Disabled Facilities Grant – Arthur’s Story

disabled facilities grants

Public bodies in the UK have certain duties to provide health, social care and other services for disabled children. Sometimes, however, families can experience difficulties in accessing these support services. Our LEaP Project team aims to provide free legal advice to families who need help getting the right support for their children.

The project publishes an annual round-up of some of the cases the project has helped with, called a Digest of Opinions. One of those cases is that of Arthur whose parents asked for help concerning a disabled facilities grant.

Arthur is 3 and has Autism, Global Development Delay (GDD) and a range of associated, complex medical conditions. Arthur has undergone various medical assessments at a children’s hospital and the clinicians have stressed the need for adaptations to Arthur’s home; in particular to his bedroom. Arthur’s parents requested an assessment from the local authority to enable the adaptations to be undertaken. The local authority advised that there is a standard delay of six months before assessments can be undertaken and an even lengthier delay in completing any works.

The legal opinion provided by the Project explains that the local authority is under a duty to assess within a reasonable time and to provide disabled facilities and adaptations (if they are necessary) within a reasonable period. Interim support should be provided, pending the assessment and provision of facilities and/or adaptations.

The full case Report can be found on page 4 of the Digest of Opinions. All the young people’s names have been changed. The opinions are a statement of the law and policy at that time – it should be remembered that the law does change.

LEaP is an innovative problem-solving project that helps families of children with brain conditions cope with the legal barriers they face. We listen to families and help them get the knowledge they need to access health, social care and other support services. We identify the common legal problems that prevent families getting access to services and we develop innovative ways of solving those problems. We aim to reach as many families as we can by sharing our solutions as widely as possible.

Read the Project Guidelines to find out more about the type of legal problems we can help with. If you would like to ask for support from the project please fill in the Online Request Form. If you would like further information, please contact us at probono@cerebra.org.uk or on 01267 242582.

School Transport – Dylan’s Story

School transport help

Public bodies in the UK have certain duties to provide health, social care and education support for disabled children. The Legal Entitlements Research Project is open to parents and carers of children aged 16 or under who have a neurodisability and who need help with a legal problem regarding access to health, social care or (to a more limited extent) education support services.

The project publishes an annual round-up of some of the cases the project has helped with, called a Digest of Opinions. One of those cases is that of 11 year old Dylan.

Dylan has severe learning difficulties, attention deficit disorder and autistic behaviours. He has a Statement of Special Educational Needs which identifies his challenging behaviour and entitles him to school transport and an escort.

Dylan’s parents were concerned that his escort was unaware of his needs and didn’t have the necessary skills to manage his behaviour. Dylan had not been introduced to his escort before his first trip to school that term. He became stressed and anxious when travelling to and from school and, on occasion, behaved violently, harming himself, the transport vehicle and other children.

The legal opinion given by the LERP details the legal duties of the authority to make sure that children are transported safely and with the minimum of stress. Drivers and escorts should be properly trained to cope with a child’s specific disability related needs and behaviour.

The full case Report can be found on page 40 of the Digest of Opinions.  All the young people’s names have been changed. The opinions are a statement of the law and policy at that time – it should be remembered that the law does change.

The Legal Entitlements Research Project is open to parents and carers of children aged 16 or under who have a neurodisability and who need help with a legal problem regarding access to health, social care or (to a more limited extent) education support services.

Read the Project Guidelines to find out more about the type of legal problems we can help with.