Tag Archives: LEaP

Direct payments don’t work for everyone

Direct payments

Our Legal Entitlements and Problem-Solving (LEAP) Project has just published a report studying the experience of families with disabled children and Direct Payments[1].

The research consisted of two parts:

  • We developed and circulated a Survey Monkey questionnaire in early 2018. It asked families about payment rates for personal assistants (PAs) [2] as well as their experiences of using Direct Payments. The survey attracted a total of 256 responses.
  • Students at Leeds University, under the supervision of Professor Luke Clements, carried out a survey of English local authority hourly rates for Direct Payments. Freedom of Information requests were made to 60 social services departments resulting in 49 usable responses.

A number of respondents clearly found Direct Payments to be a very positive experience. One stating:

DP is a lifeline I don’t know how we would have managed without it in the past 10 years. It is flexible & most definitely the way forward. I would recommend it 100% [as] it gives not only us a break but my daughter time away from us. It also allows us time with other family members without having to deal with our daughters complex needs an extremely vital resource. Long may it continue.

However, a majority reported significant problems with receiving Direct Payments. Some using the phrase ‘complete nightmare’ to summarise the difficulties they had encountered and others spoke of having to ‘fight’ and ‘battle’ to get enough help. One respondent reported:

At the moment it would seem the whole system is collapsing from health, education and social services. I just keep getting told there is nothing else they can offer me, and there are no funds to help us. The social services won’t even let me have a carer’s assessment or child in need assessment. [The] services are a disgrace at the moment.

Respondents to the family survey reported an average hourly Direct Payment rate of £8.90 gross while the local authority survey gave a higher average figure of £10.57 gross.

The report highlights the following key points:

  1. The survey reveals deep levels of dissatisfaction with the way that Direct Payment arrangements are been administered by local authorities.
  2. Rates of pay for Personal Assistants (PAs) were very low, typically at minimum wage rates. It appears that in consequence that in many local authority areas there is a serious ‘market failure’ – such that authorities are arguably in breach of their statutory and public law obligations to families with disabled children.
  3. Getting an assessment of needs was often said to be a matter of chance, with some families learning about services through word of mouth and some reporting a wait of as long as two years to get an assessment.
  4. Many respondents commented that Direct Payment rates were too low to employ suitable PAs despite their local authority being willing to pay much higher rates for agency staff.
  5. The difficulty of finding suitable staff who were prepared to work for the rates imposed by local authorities was a major and reoccurring theme of the survey as was fear by respondents of losing the Direct Payments if they were not able to find such staff.
  6. The complexity of some children’s support requirements, in conjunction with poor conditions of employment, meant that many families reported finding it impossible to recruit PAs. In conjunction with increased restrictions on the permitted use of money, this could result in money being unspent.
  7. Money that remained unspent was usually reclaimed by local authorities after periods of time that ranged from two weeks to two years, leaving families without any support. There was only one report (from 256 replies) of pay rates being increased in order to promote recruitment of a PA.
  8. There was a lack of knowledge (amongst families) as to how Direct Payments were calculated and indeed what the actual rate was in individual cases.
  9. There are considerable shortcomings in realising the original intentions behind Direct Payments. Strict rationing of resources is resulting in families experiencing stress, an acute lack of support and prolonged ‘battles’ to secure basic services that they are entitled to by law.

The report finds that ‘the research discloses deep levels of dissatisfaction with the way that Direct Payment arrangements are administered by local authorities’.

The whole report can be seen here by clicking on ‘Direct Payment Research’ .


[1] Direct Payments are moneys given directly to parents (in this case) by their local authority so that they can buy services themselves for their disabled child rather than having them arranged by the local authority.

[2] Personal Assistants are employed by families to provide services to their children (e.g. take them to community activities) and are paid using the Direct Payments they receive.

Have you been told that your child is too young to have a continence assessment?

Has your local continence team told you that your child isn’t old enough to have a continence assessment? Our new template letter could help you to make a complaint.

Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. We recently heard from a parent who had been told that her 4 year old son, who has autism and complex epilepsy, wouldn’t be able to get a continence assessment until he turned 5.  

We wrote a template letter to help the family make a complaint to the local health authority. We quoted some of the relevant guidance, which makes it clear that health authorities shouldn’t make children wait until they reach a certain age before they get a continence assessment.

We’ve uploaded the template letter so that other families who might find themselves in a similar situation can use it to make a complaint. We have separate versions of the letter for England and Wales.

Amelie gets transport to school, with help from our LEaP Project

Karen, who lives in Surrey, contacted our LEaP Project in January for help with a school transport problem. Her daughter, Amelie, is 11 years old and has Phelan McDermid syndrome. The local council had been providing transport for Amelie to go to a special school for children with severe and profound learning difficulties. When Karen told the council that they were moving to a new address, within 3 miles of the school, the council said that she needed to re-apply for transport.

Karen explained in her application that Amelie wasn’t able to walk to school because of her complex needs. But the council decided not to provide transport, because Karen had help from carers and access to a car, so she was expected to drive Amelie to school or accompany her on public transport.

We wrote a letter to help Karen appeal the council’s decision. The letter explained that the council had a legal duty to make transport arrangements for Amelie, who couldn’t be expected to walk to school or travel by public transport, even if Karen accompanied her, because of her disability. The letter also pointed out that parents can only be expected to accompany their child along a walking route, not by car.

At first, the council refused Karen’s appeal and insisted that she had ‘means and resources available’ to get Amelie to school. With our support, Karen contacted a manager at the council to demand a fuller response, which specifically addressed all the health and safety issues she had raised. A few days later, the council phoned Karen and agreed that Amelie was entitled to transport because of her special educational needs and disability.

Karen was very pleased with the council’s decision: “It was extremely stressful having to deal with the loss of transport at the same time as moving and to receive the default responses from the council, which really felt like we hadn’t been listened to. I was very lucky to be supported by our school, social worker and GP and the LEaP Project and I think with the combined effort we got the right result. I am so happy that Amelie will be able to get to school in a way that is best for her.”

Karen had to challenge the council twice before getting transport for Amelie, because the council didn’t consider her appeal information properly. We know from our experience on the LEaP Project that some councils have refused transport twice or three times before putting things right.

If you’re in a similar situation, you can read our Parent Guide on School Transport in England and use our updated school transport template letter to challenge a decision. We also have a parent guide and template letter for parents in Wales.

If you’re still unhappy after using the council’s appeals process, you also have the right to complain to the Local Government & Social Care Ombudsman or the Public Services Ombudsman for Wales.

Has your child been refused a continence assessment at home?

Has your local continence team told you that they can only assess your child at a school/hospital, rather than at home? Our new template letter could help you to make a complaint.

Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. A parent recently contacted the Project for advice about her son’s continence assessment. She had been told that the assessment had to take place at her son’s school and that home assessments weren’t possible. She was also told that the supply of nappies would stop if they weren’t able to attend the assessment at the school. The family wanted the continence team to be more flexible and consider giving them the option of an assessment at home, because of their son’s complex medical needs.

We wrote a template letter to help the family make a complaint to the local health authority. Our letter explains that public bodies must act reasonably and where they have the power to do something, they must be prepared to act flexibly, instead of adopting rigid policies.

We wanted to share this template letter with other families who might find themselves in a similar situation. We have separate versions for England and Wales.

Is your child getting unsuitable continence products?

Have you been told that your child can’t have the type of continence product that she needs? Are you concerned about the quality of the products you use? Read on to find out what you can do to make sure your child gets suitable products.

Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. We helped Louise get continence products for her daughter, Rhiannon and asked the Welsh Government to make sure that its guidance did not set a daily ‘maximum’ on the number of products available to families.

We also know from our work with families that the type and/or quality of products can cause problems too. We recently heard from a parent who wanted ‘pull-ups’ for her daughter instead of nappies. She was told that her local health authority didn’t supply them and she contacted the LEaP Project for help.

We wrote a template letter to help the parent make a complaint to her local health authority. Our letter quotes from the relevant guidance, which makes it clear that children should be assessed and provided with products which meet their individual needs. We wanted to share this template letter with other families who might find themselves in a similar situation.

So, if you’ve been told that your child can’t have the products s/he needs, you can use our template letter to make a complaint. We have separate versions for England and Wales.

Our LEaP Project helps change the Welsh Government’s guidance on continence products

Have you been told that you can’t have more than 4 continence products a day, even if your child needs more? Read on to find out how to get the products you need.

Our Legal Entitlements and Problem-Solving (LEaP) Project helps families who are struggling to get the support they need from health or social care services. Last year, we told you how we had helped Louise get continence products for her daughter, Rhiannon, who’s 9 years old and has Wolf-Hirschorn syndrome.

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.

We noticed that the Welsh Government’s guidance on continence products contradicted itself – one part said that the number of products supplied would depend on a child’s individual needs, but another part 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 highlight the problem and we were told that the guidance would be reviewed.

We’re very pleased to report that the Welsh Government has published a Welsh Health Circular , which has replaced the old guidelines with the new ‘Guidance for the provision of continence containment products to children and young people’.

The Welsh Government accepted our argument that the strict limit of 4 pads per day was “inconsistent with public law principles and a breach of children’s dignity and it does not take into account the need for a full assessment”. The new guidance makes it clear that while four pads per day may be enough for most children and young people, the number of products supplied to families should always meet a child’s individually assessed needs.

If you’ve been told that there’s a limit on the number of products you can have and you live in Wales, tell your local continence team about the above guidance and/or use our template letter to make a complaint. We also have a separate template letter for parents who live in England.

Delivering legal rights through practical problem solving

In this article we explain our Legal Entitlements and Problem-Solving (LEaP) Project with the Centre for Law and Social Justice, the School of Law, University of Leeds.

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.

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.