Tag Archives: services

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.

Do you want to see better services for people with neurodevelopmental conditions?

We are working with other charities to understand how we can better support children with brain conditions and their families and we need your help.

We want to understand what life is like for the people we represent. We want to learn about the realities of living with more than one neurodevelopmental condition (diagnosed or not).

Our partners in this project include Autistica, the Neurological Alliance, MQ, Tourettes Action, Afasic, Epilepsy Action and many more. We all want to make sure families are properly supported. Working together we have developed a survey to understand the reality of life with a neurodevelopmental condition. Our goal is to understand what support and services are making a difference and where there are gaps in the help families need.

The more responses we get, the more we will understand about how to improve the support families receive and how we should be targeting our work.

So if you want to see better services for people with neurodevelopmental conditions have your say here.  It would be great if you could also share it with your family, friends and other contacts.

Thank you. Together we can work wonders for children with brain conditions.

#neurosurvey

 

 

Professor Richard Hastings

Richard%20HastingsParents’ and service users’ experiences of challenging behaviour services

Affiliation: Centre for Educational Development, Appraisal and Research (CEDAR), University of Warwick

Biography: Richard Hastings is Professor of Psychology and Education and Cerebra Chair of Family Research in CEDAR at the University of Warwick. He carries out research on various topics in the field of learning disability and autism, including: psychological problems in children and adults with autism or learning disability, families, and educational interventions. Richard is a trustee for Mencap, the research advisor for Sibs (the UK charity for siblings of children with disabilities), and an external advisor for Ambitious about Autism.

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About Cerebra

Families where a child has a brain condition face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible. But we don’t believe there is any challenge that can’t be over come.

Our Vision is that every family that includes a child with a brain condition will have the chance to discover a better life together.

Our Mission is to listen to families that include children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.

Our key Values are:

  • Positive: Our optimism helps families see past every barrier
  • Inquisitive: A spirit of relentless discovery drives everything we do
  • Together: Our researchers, practitioners and families go further when they travel together

It’s an incredibly rewarding journey for everyone involved. Why not be a part of it? You never know what we’ll discover together.

Our Core Services:

  • The Cerebra Sleep Service
  • The Cerebra Legal Entitlements & Problem Solving Service
  • The Cerebra Health and Well-being Service
  • The Cerebra Money Matters Service
  • The Cerebra Innovation Centre

Our Annual Report (2017) and our general leaflet have lots more information on our core services and you can download them both below:

Annual Report 2017       Cerebra Leaflet

 

Alternatively please contact us on 0800 328 1159 or enquiries@cerebra.org.uk

 

Who we help:

We use ‘brain condition’ to describe any disorder or disability that affects the brain, including those caused by illness, genetics or traumatic injury. Brain conditions include (but are not limited to) autism, ADHD, Down’s syndrome, learning disabilities, cerebral palsy, epilepsy and developmental delay.

We help children aged 16 or under.

The Information Standard

information-standard-member-logo-positive_graphic-onlyCerebra’s aim is to provide high quality health and social care information for the parents and carers of children aged 0-16 years with neurological conditions. Cerebra has been a certified member of the Information Standard since August 2013. The Information Standard is an independent scheme, supported by NHS England, to ensure only the highest quality health and social care information is produced. This means that our relevant products have been through the schemes rigorous quality control procedure. For more details on what it means to have achieved the Information Standard certification, visit: http://www.england.nhs.uk/tis/

Cerebra’s objectives are to:

  • Use only current, relevant, balanced and trustworthy sources of information and ensure they are clearly referenced
  • Inform parents and carers about different conditions and the issues surrounding these so that they have a better understanding
  • Empower parents and carers to make their own decisions and resolve problems and issues

Cerebra is responsible for the accuracy of the information produced. The Information Standard shall not be responsible for any inaccuracies or omissions in the information published on Cerebra’s website. Weblogs, forums and personal experience pages/videos are excluded from the scope of certification.

Meet our Trustees

Meet our Senior Management Team

Meet our Ambassadors

Join us on our journey – make a donation here

 

Finding Local Information

We take a look at some good ways of finding information on services and support in your area.

One of the hit-and-miss aspects of finding information is knowing that something exists, in order to search it out.  It is possible to miss out, at least for a while, on services, opportunities, equipment etc. because their existence has not yet come to light.  This article points to sources of information that either list what is available or lead to contacts with local people who will know.

Finding public services

Many city, county and district councils split what they publish, between visitors’ and residents’ information. A family with a child who has additional needs might want to consult both kinds, whether that is just for a visit or to put things in place for a new situation / area; broadly speaking, for both leisure / local highlights / informal activities and statutory / community services. https://www.gov.uk/find-your-local-council will find the contact details for a local authority in a county or city, however it can be overlooked that there are different kinds of councils, and more than one may cover the same area.

Smaller town and parish councils can be a source of useful local knowledge. An example comparing the type of information available is Patchway Town Council, which exists within the South Gloucestershire unitary authority (“unitary” indicating that it functions as both a county and a district council). Local authority departments may go under different titles but will include children’s services with children’s social services, education, adult social services, housing, planning, Disabled Facilities Grants, discretionary grants, trading standards, transport and disabled vehicle parking among others.

The local authority will cover some community health-related services, but this side of things will be NHS-based or linked to the NHS in some way. For example, equipment services are likely to cross over between district nurses linked to GP surgeries, and social services (although if you are just visiting an area and need some temporary equipment, the local branch of the Red Cross might be the place to start.) To find local health services, NHS Choices, gives some details and links to parts of the UK from “other NHS sites” at the bottom of the page.

All or most of the above will be very familiar to people with some experience, but to those who are new to it, it can seem like a maze.

A few other links relating to public services:

Local Family Information Services, which provide a range of information on services available to parents, including parents of disabled children.

NHS Choices services search, to find local health-related services.

Transferring to new services, including records, can often be assisted by the services you are moving from. Capability Scotland publish a guide for people moving to there with a disabled child, some of which could also be useful in other parts of the UK. A quick reference to all your child’s needs and existing services (such as a Personal Portfolio) can be a useful tool.

Transport information can be found at: Traveline.

Finding charities and other support

Good starting-points to get the lie of the land, as it were, are libraries (and librarians) – nearby ones can be found by entering a postcode or location name at: http://www.findalibrary.org.uk/#Start.

Tourist Information Centres are listed at: http://www.information-britain.co.uk/tic.cfm (in Northern Ireland, Visitor Information Centres, http://www.discovernorthernireland.com/Visitor-Information-Centres-VICs–A2216).

Voluntary services organisations are likely to know what charities and informal groups are active in an area: in England, these are the Councils for Voluntary Service (CVS), listed at: http://www.navca.org.uk/directory/home.aspx. Wales has County Voluntary Councils, listed at: http://www.wcva.org.uk/members-partners/county-voluntary-councils. In Northern Ireland, the NICVA lists the organisations at: http://www.nicva.org/members_a-z, and in Scotland, many voluntary organisations are listed by area at: http://www.iscotland.co.uk/local/charities-and-voluntary-organisations/, and the umbrella body is the SCVO.

Another source of information about carers’ services and support groups in England, searching by town or postcode, links from http://www.nhs.uk/CarersDirect/guide/parent-carers/Pages/Parentsupportgroups.aspx.

For finding private services and suppliers: http://www.thephonebook.bt.com/publisha.content/en/index.publisha# (the listings here include youth organisations and some local support groups under “community groups”). This is not to overlook the other types of directory, yellow pages etc.

For regional and national groups, and wider organisations and services that include local activities; Netmums, contains discussions with people who have already been involved with some of them.

Local offices of national charities are good at knowing what else there is in an area, the characteristics and the contacts. Both local authorities and voluntary services are likely to list them, or it may be a case of looking at the website of the national charity concerned. For example, we have Cerebra regional family support workers around the UK.

A note about moving to a new area in the UK

There are broadly two types of people in this; those who like to research and get a good picture of a place and what is available, and those who would rather identify one key service provider for their child, or one relevant parents’ group, and find out from them what else there is when they get there. Most people who are interested to read this article on the Internet probably lean more towards the research approach, and it has to be said that at least some research is a good idea, not only in terms of looking up information, but also in terms of following up that information – remembering the salutary case of a family with a child whose educational needs were not being met well where they were living and consideration was being given to a specialist residential placement a long way from home. The family wanted their child to continue to live at home, so they uprooted everything else in order to move to a county where there was a day-school that, on paper, appeared to cater for the needs. However they did this without asking the school and, having arrived there, they found that the school did not agree. Another thing that can happen with local information – or any information – is that a facility may have changed since it was last put on to the Internet, even by an official source. I found out myself, recently, that this even extends to bus timetables, entailing a long wait at the bus stop.

If there is a choice about what area to move to, Neighbourhood statistics, and a school finder, which includes Ofsted reports etc., may be of interest.

The charity Shelter provides a basic reminder list of things to consider when moving home.

Other local intelligence

Grants from charitable trusts are often tied to what geographical area you live in, even sometimes covering a small area such as a village. You can search for these by postcode and/or other criteria at http://www.turn2us.org.uk/default.aspx.

Three 21st-century resources that are useful when you need to know about a local environment, either for a visit or to move to the area, are satellite imagery, online versions of local newspapers and local radio stations that provide online listening facilities. Streetview, Google Earth or a route-finder, for example, can give a view of an area or postcode that indicates whether there is a safe garden / park for a child to move about outside, how near a place is to facilities, what kinds of roads there are, and other things. The newspapers and radio stations will give some idea of the flavour of an area, what’s on, and probably some specific information as well.

Going abroad

The government publishes a series of “Living in” guides, covering a number of countries, containing essential local information for people planning to move abroad.

If you are looking for a particularly specialised or very specific service for a child within an area, Cerebra’s regional office or the national helpline can advise on further sources for that information.