CDC Digest The voice of the disabled children’s sector January 2015 Dear all, Happy New Year. New Year always presents us with a time for reflection, a time for new resolutions and a time to gear up and start again. We have been reflecting here about the progress on implementing the SEND reforms. It has been heartening to see how hard people have been working and new year thanks go to all young people, parents and professionals who have been jointly tackling this journey. We have been looking at how CDC can help and this issue of the Digest keeps you up to date and provides you with practical support and inspiration! Practical highlights include CDC’s response to the Ofsted Consultation, (tools on preparing for inspection coming soon), a range of tools to support you from Preparing for Adulthood and Making Ourselves Heard and new websites for young people on the NHS Constitution and Information, Advice and Support and legal updates on social care. Inspirational ideas include information from members on dance and inclusion and youth zones and the comic book genius of the Department of Ability. Our new year resolutions are: • •
To keep remembering the innate humanity of the people we work for and to do what we can to support the very best outcomes for them and To ensure we work with you all to provide the best information , support and advice service that we can
If one of your new year’s resolutions can be to tell us whether we are doing it, so much the better. Best wishes
Christine Lenehan Director, Council for Disabled Children
Contents
2
Welcome to the Winter edition!
1
What’s new in SEND
4
CDC’s Projects and Activities
8
CDC Membership Update
13
News from CDC members
14
Case law
16
Best practice: Making dance accessible
21
Best practice: Promoting inclusion in sports
24
Blog: Dan and the Department for Ability
27
Resources Training and Events
29 32
Short Breaks Bulletin
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What’s new Department for Education’s settlement at the Spending Review 2015 On November 25, the Chancellor published the results of the spending review, including details of the Department for Education’s (DfE) budget over the course of this Parliament. There were important announcements in the DfE’s settlement that relate to children and young people with SEN:
•
The government intends to introduce a national funding formula for schools, the high needs block and early years. The government will launch a consultation in 2016 and intends to implement the new formulae from 2017 to 2018. CDC will be working with DfE to ensure that any changes to the way SEN and disability are funded do not adversely affect particular groups of children and young people, and do not create perverse incentives within the system.
•
The government has protected the DfE’s central children’s services budget at over £300 million per year. This budget is used to support social care workforce standards and improve support for vulnerable children. CDC will want to ensure that a significant part of this money is used to support the SEND reforms.
•
The government will make cuts of around £600 million to the Education Services Grant. This reflects the government’s intention to reduce the local authority role in running schools and remove a number of statutory duties. CDC will be working to ensure that local authorities’ ongoing SEN and disability responsibilities continue to be adequately funded.
Ofsted and the Care Quality Commission (CQC) inspection framework In the summer of 2015 CDC warmly welcomed the request from DfE that Ofsted and the Care Quality Commission (CQC) inspect local areas on their effectiveness in fulfilling their new duties under the Children and Families Act. The introduction of a new inspection framework to support implementation, was a key priority for the sector during the passage of the Children and Families Act. Since October 14, 2015, Ofsted and CQC have been consulting on their proposals to inspect how well local areas identify and meet the needs of disabled children and young people those with special educational needs (SEN). To inform our response, CDC consulted with CDC members in October and in December hosted a consultation event in Manchester on behalf of Ofsted and the Care Quality Commission. The event included a range of professionals from the health, education, and social care sectors, parent representatives and the voluntary and community sector. CDC 4 4
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has also been commissioned to undertake some more in depth work with children and young people in January 2016. In relation to the consultation CDC has welcomed:
•
The proposal to inspect a local area as a whole, including the role of clinical commissioning groups and education establishments, rather than just local authority functions;
•
The emphasis on gathering the views of children, young people and families during the inspection process; and
•
The focus on how well a local area identifies, meet the needs, and delivers excellent outcomes for disabled children and young people and those who have SEN.
CDC has also identified some key areas where we believe the proposals could be improved:
1. Inspecting the contribution of health and social care The consultation document states that the inspection of health and social care functions will be limited to how they are involved in Education, Health and Care (EHC) assessments and EHC plans. The evaluation will not extend to an inspection of these services’ responsibilities for all disabled children and young people, and those with SEN. CDC believes this proposal would be a major shortcoming of the proposed inspection framework if it was to proceed. We believe that focusing on health and social care input solely in relation to EHC assessments and plans will send an unhelpful message that integration only applies at the level of individual children and young people, whereas the joint commissioning duties in the Children and Families Act are much wider than this. This proposal will also exclude a whole range of vital provision from the inspection process, for example short breaks services, support to children or young people with medical conditions, and Child and Adolescent Mental Health Services. Delegates at the consultation event were also unanimous in their agreement that the inspection of health and social care functions must extend beyond assessment and provision for children and young people with EHC plans. One of the primary reasons given was this would continue to place an undue focus on the statutory part of the system and recreate the problems where statements of SEN were seen as a ‘golden ticket’.
2. The size of the inspection team should be linked to the size of the local area If a local area covers a particularly large geographical area, has a particularly large population, or a particularly complex set of local arrangements (e.g. multiple CCG operating within a single local authority boundary), CDC believes that in the interests of fairness Ofsted and
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CQC should increase the size of the inspection team for these areas. This was supported by delegates at the consultation event.
3. The two day notice period for inspections needs to be given further consideration A central element of the inspection process is to understand the experience of children, young people and their families. CDC believes that a two day notice period is simply not sufficient to ensure that children, young people and their families can fully participate. The lack of notice will severely limit the number of children, young people and families who can contribute meaningfully, and prevent inspectors from reaching a balanced judgement about their experience. At the consultation event, there was not complete consensus on this issue with some tables agreeing that two days was about the right amount of time. However the majority of delegates believed the two day notice period was too short. The primary reason for concerns about the short notice period was that it would hinder the ability of inspectors to effectively and meaningfully secure the engagement of children, young people and their families. There were also concerns about the short notice period reducing the ability of professionals to meet the inspection team, and allowing inspectors to arrange visits to individual settings.
4. Improving access to childcare for the families of disabled children In November CDC, alongside partners Contact a Family, Mencap and the Family and Childcare Trust, published Levelling the Playing Field: Equal access to childcare for disabled children - One year update. This report followed up on the findings from the Parliamentary Inquiry (July 2014) which found systematic discrimination in the provision of childcare for disabled children. Levelling the Playing Field found that little had improved, with 40 per cent of families with young disabled children still missing out on their free childcare offer of 15 hours a week. The publication of Levelling the Playing Field coincided with the Childcare Bill entering the House of Commons. The Bill extends the offer of free childcare to 30 hours for working parents of 3-4 year olds. The Special Educational Consortium (SEC) has been arguing that there is compelling evidence that the current system is not working well enough for this group of children and that the bill will fail to provide equal access to the new 30 hour entitlement if the existing barriers are not removed. SEC has been supporting amendments at Committee Stage in the House of Commons which would: • Require all larger childcare providers to employ a special educational needs and disability coordinator; • Require local authorities to employ an area SENCo to support smaller childcare providers with specialist advice
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and support; •
Require local authorities to set out a plan on how they will improve access to childcare for disabled children.
While none of these amendments were accepted by the Government, SEC will return to these issues at Report Stage.
Sector funding news: SEND implementation grant funding confirmed by the Department for Education As part of the government's commitment to improving outcomes for vulnerable children, the Department for Education have last month confirmed that the following funding will continue, increasing in 2016 to 2017: •
Special educational needs and disability (SEND) implementation grant to support English local authorities in the transition to the new SEND system
•
Adoption support fund that pays for the therapeutic interventions that are so vital in maintaining a loving, stable placement
•
Staying put grant that forms part of the government's commitment to improving outcomes for care leavers to help local authorities support their young people to continue living with their foster families beyond age 18 to age 21
Full details about the grant will be circulated by the Department soon. Check their website for updates: https://www.gov.uk/government/organisations/ department-for-education
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CDC’s Projects and Activities CDC provides policy advice, guidance and practice in health, education and social care. We also deliver a number of special interest projects including the Preparing for Adulthood and Independent Support programmes and the Information, Advice and Support Service. There are a variety of ways for you to keep in-the-loop about our work and the ways in which you might be able to get involved. Read on to find out what we’ve been working on since the last Digest in October!
Professional Development Your Rights, Your Future: Making sense of the new law ‘Your Rights, Your Future’ is an interactive training session designed for any practitioner working with children and young people on the SEND reforms. Developed by the CDC participation team, Making Ourselves Heard and in partnership with disabled young people, the training will help you to help children and young people understand the changes to SEND law and their right to be involved in decisions about their support. The training focuses on four key areas prioritised by young people: •
Education, Health and Care Plans;
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Post-16 decision making;
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the Local Offer and,
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Personal Budgets.
More information about the training can be found by clicking here.
Improve your skills in supporting young people prepare for adulthood The Preparing for Adulthood (PfA) programme, delivered by CDC and NDti have launched a suite of self-evaluation tools are now available to support professionals from across education, health and social care in both children’s and adults’ services, and act as a checklist to support young people in preparing for adulthood. This is not an exhaustive list but rather a prompt to support local areas to make progress in embedding the PfA elements of the SEND reforms.
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There are key themes to consider for each audience and professionals can use this selfevaluation tool to understand what is working well and where things might need to improve. Access them here. Remember you can keep up to date on the latest news from PfA via their e-bulletin, Facebook or on twitter @PfA_tweets.
Case studies help practitioners hone their participation skills CDC’s participation team, Making Ourselves Heard (MOH), is publishing a case study series highlighting good examples of participation. The case studies aim to support participation professionals to develop materials and resources, as well as help the MOH network increase support for, and awareness of, participation throughout the sector. They have published three case studies so far, showing the breadth and range of participation across the children’s disability sector. You can read the case studies from Tower Hamlets, KIDS South West and Core Assets on the MOH webpages here: http:// councilfordisabledchildren.org.uk/what-we-do/making-ourselves-heard/newsletterand-case-studies If you would like your participation work to be featured in a case study please contact Pam Shaw, pshaw@ncb.org.uk for more information.
Information, advice and support Positive feedback for Independent Support The Independent Support team are excited to announce that they have now received 1,000 individual independent responses from parents and young people on their experience of Independent Support. The feedback is overwhelmingly positive and reflects all of the excellent work that is happening across the country. Here are some of the highlights: •
Over 86% found the support they received had a positive impact
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Over 96% confirmed that support was available when they needed it
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77% felt they were fully able to express their views and were listened to throughout the process
For more on the survey and to see what people think about the programme, please click here.
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Children and young people
New website helping children and young people understand their rights using the NHS is launched! The healthy policy team at CDC have been working with the National Children’s Bureau to create a brand new website promoting children and young people’s rights when using the NHS: www.getyourrights.org Children and young people often don’t know what their rights are when using the NHS, but knowing these rights can make a big difference. The website has been developed in partnership with children and young people, and we really want to know how we’ve done. Please encourage children and young people to look at the website and give feedback through this online survey. https://www.surveymonkey.co.uk/r/GYRprizedraw They can enter a prize draw to one of 2 £25 shopping vouchers for taking part. The survey closes at the end of January and the prize draw winner will be notified shortly after. We appreciate your support and hope you find the website a useful resource in your work with children and young people. If you have any questions or comments, please do not hesitate to contact Andrew Fellowes Afellowes@ncb.org.uk
Young disabled people’s vision for 2020 Back in November 2015, CDC held a conference looking at what the future landscape of the SEND sector will look like in 2020. As always, the young people’s workshop was a popular choice. The workshop was delivered by Katy, Corey and Jack, three young people who have been working with CDC and other disability organisations for a number of years. The panel discussed a range of issues, from adopting a social model approach to promote inclusion, to the Votes at 16 campaign and assisted technology. You can read Corey’s speech here and Jack’s blog of the session here.
IASS network launch new web portal for children and young people The recent SEND reforms mean that disabled children and young people and those with SEN have a right to receive direct and impartial information, advice and support (IAS) 10 Like what you’ve read? Sign up to receive our quarterly digest and monthly newsletters! 10
on matters relating to their SEN/Disability. IAS should be provided to children and young people covering education, health and social care. The Information, Advice and Support Services Network (IASSN), hosted at CDC, have developed a new website which aims to help disabled children and young people and those with SEN better understand what rights they have for accessing information, advice and support across education, health and social care. The website also contains full contact details for IAS Services across England. http://cyp.iassnetwork.org.uk/
Inclusion CDC’s European Hearing work - “Dare to say what you want” In October, CDC’s education and participation teams supported two young people to take part in Take Action: Luxembourg Recommendations, the European Hearing for Inclusive Education. Organised by the European Agency for Special Needs and Inclusive Education, the hearing brought together young people from 32 countries to share their experiences of inclusive education. The European Hearing takes place every four years and aims to gather evidence of inclusive practice from disabled young people with a range of mainstream education experiences. This year’s hearing focussed on examples where schools work well to remove physical and attitudinal barriers to promote inclusive education. The young people also drafted a set of key messages on improving communication between schools and students, and increasing support to access subjects where currently they may be excluded i.e. physical education. The European Agency will take forward these key messages over the next four years.
Health NHS Mandate 2016-17 Consultation The Children’s Health Policy Influencing Group has issued a joint response to the Government’s Consultation on the NHS Mandate. The Mandate sets out the Governments priorities for the NHS for the upcoming financial year, and the Government Consultation asked about the operation of the mandate and NHS priority areas. The joint response called for the Department of Health and the NHS to make children and young people’s health a priority by taking forwards better health outcomes for children 11 Inform and be informed on a variety of disabled children’s issues. Click here to become a member of CDC 11
and young people: our pledge, or an equivalent. It also highlighted the need to implement the Government’s Future in Mind report and the pledged £1.25bn investment in children and young people’s mental health. You can read the response here. For more information about joining the Health Policy Influencing group email Luke Nunn Lnunn@ncb.org.uk
DfE answers top 10 questions from parents on changes to SEN and disability education Special Needs Jungle is a blog and resource website aimed for parents and those who work with children affected by SEN, disabilities or who have a physical or mental health condition of any type, especially rare diseases. Recently, readers of the website put their questions about the SEND reforms to the Department for Education. These fell into 10 themes: 1. SEN support
6. Provision
2. Training
7. Post-16
3. Inclusion
8. Appeals
4. EHCP assessments
9. Personal Budgets
5. Transition to EHCP
10. Alternative Provision
All the Department’s answers to reader questions are now up on the Special Needs Jungle website, giving in-depth feedback on the themes raised by readers. The answers can be read in two parts: Part 1 http://www.specialneedsjungle.com/the-dfe-answers-your-top10-questions-on-the-changes-in-sen-and-disability-education/ and part 2 http://www. specialneedsjungle.com/12706-2/
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CDC Membership Update We’re excited to announce that the next CDC members meeting will be taking place Click to Monday 29 February 2016 11am-3.45pm at NCB, 8 Wakley Street, London EC1V apply 7QE. (click here for a map). It’s a great chance for CDC members to get together for CDC and share information and discuss sector issues. The agenda is to be confirmed membe rship but there will be an opportunity to hear updates from DfE, the chance to hear about innovative practice from colleagues in the sector and plenty of time for networking with fellow organisations. Click here to book your place now. If you have any queries about the meeting or if you would like to know more about CDC membership, please email Daphne Henderson-Figueroa on dhenderson@ncb.org.uk Since the last Digest we’ve had a few new additions to the CDC family. A big welcoming shout out to our new members: •
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•
•
•
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Batten Disease Family Association The Batten Disease Family Association (BDFA) is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as Batten disease. Amaze Amaze is a charity that provides information, advice and support to families of children and young people with special educational needs and disabilities (SEND) in Brighton and Hove. Community Arts Network CIC The organisation provides inclusive play based childcare and provide training in inclusion and Playwork. They have also developed specialist services including short breaks and a youth club. The Children’s Sleep Charity The organisation offers sleep support to families of children with disabilities using a behavioural approach. They also offer training to professionals to ensure that they can offer support in an effective manner. Noah’s Ark Children’s Hospice is a community based hospice service providing support for children and young people with life-limiting or life-threatening conditions and their families in North London. Credo Care Credo Care provides a multi-disciplinary foster care option for children and young people with complex needs. Imago Imago are a social action organisation delivering diverse services and supporting individual, organisations and communities across Kent, Medway, East Sussex and London.
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News from CDC Members Ambitious about Autism takes young people to Parliament to plan Employ Autism campaign CDC member, Ambitious About Autism, tells us about a recent roundtable event for young people to encourage employment in young people with autism By Sophie Allison
Ambitious about Autism, the national charity for children and young people with autism, took 11 of its Youth Patrons to Parliament for a roundtable event with MPs, peers and other influencers. The event was to start a conversation between the Youth Patrons and MPs as the young people plan an employability campaign, Employ Autism: from school to work, to engage decision makers in the campaign, and get expert advice about developing the campaign in the most effective way. The aim of the campaign is to transform the employability of young people with autism, by improving their transition from school to work. Participants discussed three key topics: careers guidance; work skills and experience; and post-16 education. As well as the Youth Patrons, those sitting around the table included Justin Tomlinson MP, Minister for Disabled People and Speaker John Bercow who is also a Parent Patron of Ambitious about Autism. The campaign will be launched at Ambitious about Autism’s employability conference in February. More information can be found in this blog about the day.
Pioneering service for children with acquired brain injury expands following Government grant CDC member, The Children’s Trust, shares news about their new service By Stacey Daniells
The Children’s Trust is the UK’s leading charity for children with brain injury. Their pioneering new service for children and young people affected by acquired brain injury is expanding nationwide after the Department for Education (DfE) awarded a 12 month grant of £400,000 to The Children’s Trust earlier this year (2015).
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The grant enabled specialist services for children with mild to moderate brain injury to be set up across South West London, Surrey, Sussex, Hampshire and Dorset and Isle of Wight, alongside the existing services in South Yorkshire and East Midlands. Services in North Yorkshire and Humber will launch in January 2016. Until now the service had previously been funded by donations from a range of sources. As a result of the DfE grant, new services have been established in University Hospital Southampton and St George’s Hospital, London. Services will start in Leeds Children’s Hospital next year. The Children’s Trust estimates in the region of 1000 children can be screened over the next 12 months to identify and support mental health needs resulting from their acquired brain injury. Dalton Leong, Chief Executive of The Children’s Trust, added: “We are delighted to have secured this 12 month grant. It is the first time that the department has recognised the importance of supporting children with acquired brain injury as a specific group which is a huge step for us as an organisation. Our ambition is to ensure that children with brain injury all across the UK can access timely expert and specialist support and the grant from the DfE is an important milestone in achieving this ambition. We will be seeking donations to continue the services when the grant ends.” For more on this story please click here: http://www.thechildrenstrust.org.uk
Want to become a member? Membership is free and helps you and your organisation keep up to date with the latest news and announcements within our sector. Membership is open to any voluntary community organisation. There are so many benefits to being a member including: •
the unique opportunity to inform and be informed on a variety of disabled children’s issues. • the chance to attend CDC Council Meetings. • the opportunity to join CDC working groups. • a free monthly e-mail newsletter and quarterly Digest, summarising essential policy and practice. • regular invitations to workshop sessions/conferences on key policy and practice issues. Becoming a member is quick and easy. All you have to do is fill out an application form on our website: http://www.councilfordisabledchildren.org.uk/getting-involved/become-a-member
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Case Law Our series of case law reviews on judgements relating to special educational needs and disability continues with two case law review summaries compiled by barrister Steve Broach from Monckton Chambers. To read the full accounts including advice on what the judgements mean to children, families and local authorities, click on the link at the end of each summary review.
CDC case law update 4 – December 2015 This update is intended to provide general information. It cannot and does not provide advice in relation to individual cases. Where legal issues arise specialist legal advice should be taken in relation to the particular case.
The Warwickshire judgment – implications for social care related assessments of disabled children Case overview This update builds on case law update 1, which summarised the judgment in R (L and P) v Warwickshire County Council [2015] EWHC 203 (Admin) (‘the Warwickshire judgment’). The purpose of this update is to consider in more detail the implications of the Warwickshire judgment on ‘Ground C’, concerning access to social work assessments.
Decision The Judge dismissed the claim against Warwickshire in relation to Ground C. Permission to appeal to the Court of Appeal on this issue has now been finally refused. Ground C was discussed in the judgment at paragraphs 61-73. At paragraph 68, the Judge set out relevant extracts from Warwickshire’s policy. These included: ‘Children in need may be assessed through a CAF Assessment or through other assessments in relation to the care they are receiving, their special educational needs, disabilities, or as a carer, because they have committed a crime, for children and young people whose parents are in prison and for asylum seeking young people.
… Where a child or young person or their family has very complex needs or the CAF Family Support Plan has not resulted in the desired improvement outcomes for the child or young person, an assessment by a Local Authority Social Care may be appropriate.’
The lawyers acting for the children challenged this on the basis that ‘any child who is or may be a child in need’ is entitled to a social care assessment’ (judgment at paragraph 61). 16 Like what you’ve read? Sign up to receive our quarterly digest and monthly newsletters! 16
The Judge’s conclusions on Ground Care at paragraphs 71-72 and included: ‘...It would not make sense for any child with any “mental disorder” to be entitled automatically to receive a section 17 assessment conducted by a social worker...it may, for example, be entirely inappropriate for a child with dyslexia or dyspraxia to receive a social care assessment under section 17.
In my judgment the guidance should not be read as insisting that every disabled child should initially be the subject of a full-blown social worker assessment. Alternatively, if it does say that then local authorities and safeguarding boards would have good reason for departing therefrom. The approach taken in the threshold document strikes me as eminently reasonable in terms of initial deployment of resources.’
It appears that in the light of the Warwickshire judgment, the legal position on social care related assessments for disabled children is as follows:
1.
All ‘disabled’ children are children ‘in need’.1
2.
All children ‘in need’ are entitled to some form of assessment.2
3. However there are no statutory duties as to the form of the assessment or who should carry it out. This is in contrast to the position for assessments of disabled adults, where there are detailed statutory duties under the Care Act 2014.3 4. Following the Warwickshire judgment, local authorities are permitted to decide that some ‘disabled’ children with lesser needs will be assessed at least at first under the Common Assessment Framework – for example through an ‘Early Help’ assessment. 5.
Disabled children with more complex needs should be assessed by social workers.
6. However disabled children are assessed, it is vital that assessments are done in a ‘joined up’ way.
After the Warwickshire judgment was handed down, the Department for Education published the latest edition of the Working Together to Safeguard Children statutory guidance (March 2015). There is a legal duty on local authorities to follow this guidance unless there is a ‘considered decision that there is good reason to deviate from it’.4 Working Together (2015) contains key guidance in this area at pp18-19. This guidance is discussed under ‘implications for local authorities’ below. 1 See Children Act 1989 section 17(10)(c) and (11). Section 17(11) states a child is ‘disabled’ if ‘he is blind, deaf or dumb or suffers from mental disorder of any kind or is substantially and permanently handicapped by illness, injury or congenital deformity...’.
R (G) v Barnet LBC [2003] UKHL 57. In R (J) v Worcestershire CC [2014] EWCA Civ 1518, the Court of Appeal recently held at paragraph 13 that ‘a duty to assess...is triggered by the physical presence of a child in need in a local authority's area. No more is needed’.
2
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Case Law cont’d What this means for children, young people and families The local authority should explain to families which children will receive an assessment by a social worker and which children will be assessed under the Common Assessment Framework, for example through an ‘Early Help’ assessment. Parents may also want to ask for a ‘parent carers’ needs assessment’5 which should be done at the same time as the assessment of the disabled child – and can be combined into a single assessment document if everyone agrees. Whatever form of assessment is used and whoever carries it out, what matters most is that the needs of disabled children and their families are properly understood so that informed decisions can be made about the level of support they need from their local authority.
Implications for local authorities Each local authority will have to decide where it wants to ‘draw the line’ for disabled children to be able to access an assessment by a social worker. Local authorities will note that the examples given in the Warwickshire judgment of children for whom a ‘full-blown’ social worker assessment may not be appropriate were children with dyslexia or dyspraxia. Local authorities will need to have regard to their duties under the Equality Act 2010. It may be that treating different groups of disabled children differently, for example because of their medical diagnosis, gives rise to unlawful discrimination under the 2010 Act.6 This issue was not considered in the Warwickshire judgment. The local authority will also need to consider carefully the guidance in Working Together (2015) at pp18-19. In particular: 1. The 2015 guidance seems to strengthen the obligation to ensure that assessments are carried out by social workers. Does the local authority accept that this is what the guidance says? If so, does the local authority have good reason to depart from it? 2. The guidance states that when assessing a disabled child the local authority ‘must also consider whether it is necessary to provide support under [the CSDPA 1970]’.7 Does the way the local authority uses ‘Early Help’ assessments allow it to reach the decision required under the CSDPA 1970, being whether it is necessary to meet the needs of the child to provide any of the services listed in section 2(6)?8 3.
Is there a joined up process so that ‘Early Help’ assessments can be carried out
See section 9 of the Care Act 2014 and the Care and Support Assessment Regulations 2014. These are explained in chapter 6 of the Care and Support Statutory Guidance.
3
4
See R (TG) v Lambeth LBC [2011] EWCA Civ 526 at paragraph 17.
Under sections 17ZB-ZD of the Children Act 1989, inserted by section 97 of the Children and Families Act 2014.
5
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alongside parent carer needs assessments – or indeed to carry out both as one single assessment if everyone agrees? Whatever form an assessment takes, what matters is that it allows the local authority to answer two key questions: 1.
What are the child’s needs, in their family context?
2. Which needs is it necessary for the local authority to meet, taking account of their duties to safeguard and promote the child’s welfare? Where there are child protection concerns, local authorities will need immediately to refer the case to the relevant social work team in accordance with section 47 of the Children Act 1989 and Working Together (2015). Each local authority should have a transparent and public policy on assessment for disabled children set out in the ‘threshold document’ issued by the Safeguarding Children’s Board for which it is a member; see Working Together (2015) at p15, para 18.
Read the rest of Steve Broach’s summary, including what it means for children and families and the implications for local authorities, at www. councilfordisabledchildren.org.uk/case_law4
Read the rest of Steve Broach’s summary, including what it means for children and families and the implications for local authorities, at www. councilfordisabledchildren.org.uk/ 6
And potentially also Article 14 ECHR, the right to non-discrimination in the enjoyment of all human rights.
This reflects the fact that the duty under the CSDPA 1970 is discharged by the local authority exercising functions under Part 3 of the Children Act 1989, particularly section 17; see section 2(4) of the CSDPA 1970.
7
The service list in section 2(6) is very broad and includes (amongst other things) all forms of short breaks other than residential short breaks, domiciliary care, adaptations to the home, transport to social care activities, assistance with accessing education and holidays.
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Case Law cont’d CDC case law update 5 – December 2015 This update is intended to provide general information about recent decisions of the courts and Upper Tribunal which are relevant to disabled children, young people, families and professionals. It cannot and does not provide advice in relation to individual cases. Where legal issues arise specialist legal advice should be taken in relation to the particular case.
Re AB (A child: Deprivation of liberty) [2015] EWHC 3125 (Fam) Case overview This update follows case law update 3 on Re D (A Child; deprivation of liberty) [2015] EWHC 922 (Fam). It concerns a later judgment of the same Judge (Mr Justice Keehan) on another case concerning ‘deprivation of liberty’ for a disabled child. The background to these issues, including the Supreme Court judgment in Cheshire West9, is set out in case law update 3. Following Cheshire West, a disabled person will be deprived of their liberty under Article 5 of the European Convention on Human Rights if: 1. They are subject to continuous supervision and control and are not free to leave the place they live; 2.
There is no valid consent; and
3.
The state has some responsibility for the deprivation of liberty.
This judgment and the judgment in Re D are mainly about how the consent requirement operates in cases concerning children. This judgment concerned a 14 year old child, AB. He was living in a children’s home and the parties agreed that the circumstances gave rise to a deprivation of liberty, unless there was valid consent. AB is described at para 12 of the judgment as having a learning disability and attention deficit hyperactivity disorder (ADHD). The Judge held that he was happy and settled at the children’s home but was not competent to make decisions about where he wants to live. In June 2015 AB was made the subject of an interim care order. The local authority sought to have the deprivation of liberty authorised by the court under its ‘inherent jurisdiction’. The Judge held at para 3 that there was four issues to decide: 1.
Whether AB was deprived of his liberty at the children’s home
2.
If so, were his parents and/or the local authority entitled to consent to this?
3.
If not, should the court approve the arrangements and if so under what legal route?
4.
What guidance was needed in relation to future cases.
Read the rest of Steve Broach’s summary, including what it means for children and families and the implications for local authorities, at www. councilfordisabledchildren.org.uk/case_law5 20 20 20
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Sharing best practice:
Making dance an accessible art for disabled people Written by Sho Shibata, from Stopgap Dance Company
Stopgap are a new member of CDC have an extensive creative learning programme designed with disabled young people in mind, as well as an international touring performance company with disabled and non-disabled dancers.
In the early days The art form of dance is commonly perceived to be inaccessible for disabled people because a dancer is expected to have a ‘perfect body’. Things changed drastically though, when a dance company called Candoco hit the scene in 1991. Candoco comprised of disabled and non-disabled dancers who toured outstanding dance shows all around UK and the world. By the mid 90s, they convinced everyone that dance can be inclusive, and many companies like Stopgap began appearing soon after to start doing it ourselves. In the early days though, most audiences of inclusive dance were simply amazed that disabled people could perform with professionally trained non-disabled dancers. For this reason, the quality of these dance shows wasn’t always under a huge scrutiny. However, as people’s expectations grew (particularly within the dance industry), the pressure of producing well-trained and more professional disabled dancers got bigger. Success breed pressure, but this was a welcome challenge for Stopgap.
Establishing a level playing field To develop well-trained and professional disabled dancers, we first reflected on how the professional non-disabled dancers did their training. The non-disabled dancers have a well-established educational system to develop their professional skills from baby ballet to Higher Education, and they continue sharpening their creative tools (i.e. their bodies) by their routine of technical dance classes. It’s quite normal for professional non-disabled dancers to do dance classes before each dance rehearsal. However, inclusive dance classes back in the early days were heavily based on improvisation, and the dancers (both disabled and non-disabled) were given pretty much free reign in the studio. This meant that the platform of professional development was unequal between disabled and non-disabled dancers. If the non-disabled dancers needed rigorous classes that are designed to challenge their bodies, why was it the case that the same didn’t apply to the disabled dancers? We realised that to have a truly equal playing field, the level of educational investment and rigour had to be the same between disabled and non-disabled dancers.
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Developing a training technique But we had a puzzle to solve: ‘Dance technique’ is commonly based on students training towards a ‘perfect body’, so is it ever possible to develop a technique for disabled people? To solve this puzzle, we analysed what a dance class was for, looked at the barriers around it and discussed whether it had to be inherently inaccessible. In other words, we decided to analyse conventional dance classes with the social model of disability in mind. Dancers are looking to achieve two basic objectives in training: to get to know their own bodies and to learn to control their movement consistently. Learning to control one’s body is crucial in dance because it then allows for accurate expression of complex emotions. In conventional dance training, the students do a series of exercises to achieve this. They do exercises like the Plié, which requires them to bend their knees in certain ways, and a combination of exercises like these develops physically capable individuals. Of course, someone who uses a wheelchair, or for those who have no legs, cannot by definition do a Plié, but what is this Plié really all about? Does it really need to be so inaccessible? Here’s what Stopgap thinks about it:
‘Plié’ = ‘Bending one’s knees’ = ‘an act of getting down lower’
When you translate a conventional dance exercise like this, what seems a rigidly inaccessible action becomes suddenly open to a classroom of diverse dancers. Through this accessible translation, each dancer can now learn how his/her unique body ‘gets down lower’, and the repetition of these tailor-made exercises can strengthen how a movement can happen more consistently in their individual bodies. Some conservative dance aficionados would argue that the Plié specifically means ‘the bending of the knees in specific angles’. And of course, they are correct if they are bound by one notion of a ‘perfect body’ that defines what is ‘a good dancer’. But Stopgap has translated the notion of this ‘perfect body’ into a ‘better controlled body that is specific to that unique person’. In our eyes, ‘perfection’ comes in different guises.
Redefining dance This redefinition doesn’t mean we’re creating bad dancers either. We are still teaching dancers how to move their bodies expressively. We’re just not restricting our measurement by an aesthetic ideal that only applies to super-humans. It’s taken 20 years to develop Stopgap’s practice, but we now have a handful of professional
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disabled dancers who make shows and perform alongside non-disabled peers. Our shows are widely accepted as high-quality, and they tour nationally and internationally with support from Arts Council England and British Council. Because all our dancers have contributed in developing our inclusive practice, they are also great educators and advocates. Alongside the performance work, we do teacher training and other artist development workshops. We are one of the international leaders in inclusive dance now and our reputation continues to grow.
Dare to dream We are getting much more efficient at training disabled dancers too, and we are establishing an infrastructure to speed up this process. We have now established a trainee company called Sg2 and four youth companies. Stopgap as a whole organisation is becoming a pathway to profession for aspiring disabled dancers. We base our model on premiere league football clubs that have good academies and grassroots provision. This way, many more disabled children can dare to dream of becoming an excellent dancer. Stopgap is now talking to syllabus providers, dance schools and Higher Education Institutions too, so that they can make their provision inclusive. We’re only a small organisation based in Surrey, and these bigger organisations need to come on board to make the entire industry accessible. That’s our next chapter. Stopgap has successfully applied the social model of disability to make a seemingly inaccessible profession accessible. We want to meet other organisations that have gone through a similar process, so that we can build a case to inclusion instigate inclusion in other corners of the society. By sharing how we’ve done it, we can hopefully open up new opportunities for disabled children and make their futures brighter.
For more information about Stopgap Dance Company and for details of upcoming shows, please see their website here: http://stopgapdance.com/
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Sharing best practice: Promoting inclusion in sports
Written by Hayley Rose, from the Seashell Trust
CDC member Seashell Trust is dedicated to providing a creative, happy and secure environment for children and adults with complex and severe learning disabilities which include little or no language abilities.
Seashell Trust is a Cheadle Hulme based charity which provides Ofsted ‘Outstanding’ education and care for children and young people with complex special educational needs and communication difficulties. In response to a lack of opportunities for disabled children to play sports, Seashell Trust created the first CADS (Children’s Abled and Disabled Sport) programme in 2004 which went on to win several awards. Since then, CADS runs regular holiday activity programmes and sports clubs for the local community and has expanded to include expressive arts such as dance, music and art.
OnSide Youth Zones is a charity which aims to build a network of 21st century youth zones dedicated to the sole use of young people aged 8-19 and up to 25 with additional needs. They provide young people across the UK safe and affordable places to go, are open 7 days a week and offer a wide range of activities from cooking to performing arts. Since 2008, OnSide, building on the success of Bolton Lads & Girls Club, have developed Youth Zones in Carlisle, Blackburn, Oldham, Manchester and Wigan, and their 20 by 20 Vision aims to open twenty zones by 2020. The next zone will open in January 2016 in Wolverhampton.
Seashell and OnSide collaborated in a three year partnership project, A Level Playing Field, to engage 1200 disabled young people and their families with a range of sports and creative activities in six state-of-the-art youth centres. While Seashell Trust had experience in successfully providing small-scale inclusive sports events, it lacked the infrastructure to expand beyond its immediate local area. This limited the number of young people it could reach through its award-winning CADS model. OnSide recognised that in order to replicate the success of the Bolton Lads and Girls Club across a growing network of new organisations and develop their inclusive offer they would require specialist support. Thanks to funding from the Big Lottery and St James Place, Onside joined forces with Seashell Trust to build the capacity of their team to deliver the best outcomes for young people.
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Participation in sports Disabled young people are less likely than their non-disabled peers to participate in sports, and frequently lacked opportunities locally to socialise with other young people within a safe, accessible, supportive environment. They are more likely to struggle with low selfesteem, isolation, bullying and low aspiration, and parents with disabled children may be less ambitious for their child’s future. This increases the pressure on families, and on local health and social care services, and highlights the need for community facilities. Volunteers, youth workers and managers involved in the project were trained by Seashell Trust staff on relevant issues including personal care, communication, moving & handling, mental health and positive behaviour techniques. This training was initially based on Seashell Trust’s own training package; as the project continued, the training became more specialist and bespoke to respond to each Zone’s clientele. Youth Zones delivered the CADS programme during the school holidays, with individual centres adapting the event to their own delivery model, and the first Inter-Youth Zone CADS took place in May 2015 at Seashell Trust, bringing together young people and staff from across the Youth Zone Network.
Tailored project progression The delivery model varied between centres, with some prioritising recruitment of inclusion workers to support individual clients and others investing more heavily in training for all staff. CADS, too, was interpreted differently: some Youth Zones offered CADS exclusively, others ran it alongside their usual activities. Each Zone reflected their local community which meant that client groups, pricing and activities could also vary greatly between centres. Seashell Trust’s training model became more tailored and bespoke as the project progressed, both to address each Zone’s specific needs and to address lessons learned about changing mind-sets. Our one-size-fits-all approach encountered some resistance in the early days and the initial lack of inclusion standards meant that the ethos and vision of inclusion was not shared equally across the network. Young people with a disability accessing the Youth Zones has increased by 300% since the project began. The total number of young people with an additional need or disability accessing the six Youth Zones in the North West has increased from 587 at the start of the project to 2,023 young people with 50% having attended at least 6 times over an 8 week period. Through active participation and attending Youth Zones we know this has impacted on young people’s confidence, esteem, aspirations, independence, access to sport and physical activity and 25 Inform and be informed on a variety of disabled children’s issues. Click here to become a member of CDC 25
outcomes such as increased school attendance and improved relationships in the home. Project Co-ordinator Stephen Pearson commented:
“We have seen more young people, more regularly, access Youth Zones to take up the offer which impacts on the young person’s confidence and aspirations. Inclusion is more than a word or a carefully placed statement to describe what we are all about. It is an intrinsic value that we work hard towards ensuring every staff and volunteer member own, as part of their delivery and approach in engaging young people with a disability.”
Vision, value and toolkits Now in its third year the project is developing a vision, values, tool kits and a quality assurance framework to replicate in any organisation in becoming inclusive. Inclusion standards will be embedded across the Onside network, such that the next Youth Zones to be launched in Wolverhampton and London will deliver high-quality accessible activities for disabled and non-disabled young people from the outset. OnSide can assure the quality of work across all centres and Seashell Trust will continue to provide bespoke training packages and support the project in whatever form it continues. Other areas of development include improving networks with local organisations, councils and parent-carer forums and targeting marketing and communications to grow participation and investment from young people, their families and the wider community.
Lessons learned Seashell Trust and Onside are now consolidating the learning and developing a case for sustainability. This collaborative approach has been invaluable in developing quality services alongside young people, parents/carers, partners and stakeholders. For more information about the Seashell Trust please click here: http://www.seashelltrust. org.uk/sports/what-we-offer For more about the OnSide Youth Zones click here: www.onsideyouthzones.org
We love being able to showcase CDC members achievements. Let us know if you’ve got an innovative project that you’d like us to feature by emailing dhenderson@ncb.org.uk If you’re not yet a member of CDC, join the family by applying for your free membership here: http://www.councilfordisabledchildren.org.uk/getting-involved/become-a-member
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Blog: Dan and the Department of Ability By Dan White, creator of the Department for Ability Dan is an artist and a father to 9 year old Emily. In this blog he talks about his frustration about the lack of positive role models for disabled children and young people and how he decided to take on the challenge of filling that gap.
This is our story, the plan of Dad and Emily, SUPERHEROES, comics, the media...and the shared ambitions of Strongbones Charitable Trust. When Emily first became aware of the box with pictures that resides in our lounge (and figured out how to use the remote control for it), I thought, ‘let’s find some TV characters she can identify with: some strong, positive figures she can relate with’. I looked through endless channels and sadly, apart from a few on the marvellous CBBC, nothing. Disney, Nickelodeon – nothing! It was also at this time I began to look into comics and books for her, again, apart from Marvel’s attempts in the shape of Daredevil, Professor Xavier, there was nothing for her to relate to. My frustration and angst was growing. I began speaking to the brilliant kids in the groups and communities we mix in and they all told me the same. ‘Where are disabled children represented?’ and ‘Why are the disabled children that do appear on telly always in need?’ I wanted something better for Emily. As parents we are desperate for the wider world to see our children as they are, fun, passionate and determined to succeed. The London Paralympics 2012 carried a flame for the disabled community. We all thought, ‘this is it, this is when this enormous community of incredible people will be led into the mainstream and integrated into all aspects of, not just media life, but everyday life’. But I believe we’ve lost that momentum and we risk that flame flickering out entirely. Inclusion in all aspects of society is a must! If we’re to challenge these old attitudes then something has to change now. I have discovered some marvellous groups online, all fighting the same fight. Many of these amazing people have already beat me to the punch, making a difference in their own unique way. For me, I thought the best, and most important place to start is with the kids. Kids are curious, they are accepting, they are intelligent and they are expressive. So I decided to create some superheroes that are accessible, that show a disability but do not
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Blog cont’d lecture about it. I hoped that by taking a theme that all kids love and share an interest, it would start the ball rolling to a more inclusive and integrated childhood experience. Superheroes! Kids love them (so do I). I started sketching and writing. The waste bin was overflowing until the day I came up with my final superhero team and called them the Department of Ability. Five unique cartoon characters brought together to save the world. To make it more fun I made them a diverse bunch. We have a ghost, a dog, a cheetah, an alien and of course, Emily! I sent sketches and emails to numerous comic book publications, toy companies, animation companies and TV channels and I always received the courtesy rejection letter, usually stating that the disabled community is a minority and the subject matter is too specific! Minority? 9 million in the UK alone? The knock backs continued until the day that Strongbones came a knocking. Strongbones are a wonderful charity based in London that help children with brittle bone disease, bone cancer, scoliosis and arthritis. They saw my initial pictures and responded within 15 minutes. They asked me if I could write and draw a comic book which they would fund and distribute as far and wide as possible. Finally someone who shared my vision. I had a partner! The opportunity was fantastic, the seed was planted! During the past year things have gone from calm to a storm. Last Christmas Emily spent several tricky weeks in hospital. We got home in time for Christmas, and shortly after my father passed away. I was blessed to be able to tell him what I was doing and lucky enough to have the time to tell him all I wanted. He was the one who started me drawing, bringing me home paper every night to create my comics on. It was also at this time that I suffered a recurrence of depression, and a decision was made for me, by my wonderful wife and parents-in-law, to keep on with the Department of Ability. What has become very clear to me is that this comic project has potential. The following from all over the world is growing. From America to Australia, from SCOPE and MENCAP to the Mighty, and from schools to everyday families. So now I work from home, getting messages of support from new friends like Mik Scarlet, Hannah Cockcroft, Matthew Wright, SCOPE and Stephen Dixon from SKY, , and many more. I have no income at present, but I have belief. Hopefully, step by small step we can challenge those negative attitudes towards disability and hey, maybe one day, the Department of Ability will make it onto that box in the corner of my living room! To find out more about the Department of Ability, go on their website here: http://www.departmentofability.com/
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Resources Do siblings matter too? A summary research project investigating what it is like to be a sibling of a child with a disability A new report from Family Fund and the University of Portsmouth reveals the impact a disabled brother or sister has on a child or young person, showing their experience firsthand through photographs. Click here to read and download.
What do the SEN and disability reforms mean for early years settings? Changes to the Children and Families Act in September 2014 have changed the way that provisions in the Act that relate to children and young people with SEN and disabilities work. CDC and DfE have produced a new leaflet looking at how the reforms impact on early years settings. The leaflet can be downloaded by clicking here. Your Rights, Your Future: Making sense of the new law Making Ourselves Heard have launched a new toolkit to provide information to young people on the SEND reforms and their right to be involved in decisions about their support. ‘Your Rights, Your Future’ is aimed at professionals working with young people. The toolkit offers a range of interactive activities for professionals to use with young people to support their understanding on the changes to their SEND support and how it affects them. To find out more about the resource, download your copy and see what people have said about the training, please go to www.councilfordisabledchildren.org.uk/yryf Department for Education addresses questions about the SEND reforms In this new blog, the Department answers top 10 questions from parents on the Special Needs Jungle website. Part 1 can be read by clicking here and part 2 can be read by clicking here.
A guide to safeguarding, managing risk and personal budgets This guide looks at maximising opportunities and minimising risks of using personal budgets for children with special educational needs and disability in England. Click here to download.
Preparing for Adulthood Good Practice Toolkit This guide focuses on young people who are preparing for adulthood – those aged 1425 who will be transferring from a statement of special educational needs (SEN) or are receiving support at college following a Learning Difficulty Assessment (LDA). Click here to read and download.
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Talking about sex, sexuality and relationships: Guidance and standards A free guide is now available for professionals to support young people with uncertain lifeexpectancy who want to experience intimacy, sex and relationships. Click here to download.
Joining the dots: Have recent reforms worked for those with SEND? A new report from the Driver Youth Trust looks at how the 2014 Children and Families Act has impacted on those with SEND in the education system. Click here to read and download.
Practice advice: Speech, language and communication needs (SLCN) in the youth justice system The Youth Justice Board has published new guidance for practitioners and managers in youth voffending teams and secure accommodation on working with young people with speech, language and communication needs. Click here to read and download. What do the SEN and disability reforms mean for schools? In September 2014 most of the provisions in the Children and Families Act that relate to children and young people with SEN and disabilities came into force. CDC have worked with nasen and the SEN Leaders programme to produce a briefing on what the reforms mean for schools one year on, who has responsibility for what and what support is available for schools. Schools may want to use the briefing to check how they are doing. To read and download this briefing please click here. The role of social care in implementing the Children and Families Act This is a guide for strategic leaders in children’s and adult services, frontline managers, social workers and staff working in social care assessment teams. Click here to read and download.
Resources from CDC’s “SEND: A vision for 2020” conference On 11th November CDC held a conference which looked at the future of SEND in the next 5 years. All the resources from the day can be found by clicking here.
Recap of recent roundtable meeting of parents and the Minister for Children and Families on the SEND reforms The meeting was held to seek parents’ views on how the recent SEND reforms are being implemented. In attendance was Flora Goldhill, a
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senior official from the Department of Health, parent representatives, Contact a Family and the Council for Disabled Children. Full notes from the day can be found by clicking here.
Self-evaluation tools for practitioners working with young people A suite of self-evaluation tools are now available to support professionals from across education, health and social care in both children’s and adults’ services, to act as a checklist to support young people in preparing for adulthood. This is not an exhaustive list but rather a prompt to support local areas to make progress in embedding the PfA elements of the SEND reforms. Access them here. Independent Support: A linear report This report outlines some of the key national activities and outcomes achieved from the start of the programme up to September 2015. The report can be found on the CDC website.
How can you engage young people in the Local Offer? A new leaflet has been developed in partnership with EPIC based on young people’s experiences of accessing the Local Offer. It highlights what EPIC want local areas to do to make the Local Offer work better for disabled children and young people, and children and young people with Special Educational Needs. Click here to download.
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Training Bespoke training from CDC We deliver training to help practitioners and services for children, young people and families on a range of current issues. Our training combines sensible guidance on all the latest legislation with practical advice and solutions for delivering good outcomes for children and young people. All of our training can be delivered on request to your organisation either on site or at our offices in London. To find out more about the following training please contact 020 7843 1900 or email cdc@ncb.org.uk for a quote or click on the link to see the full training programme: http://www.councilfordisabledchildren.org.uk/what-we-do/training
Finished at School training This face–to–face training programme has been created for all school, college and local authority staff involved with transition. Its focus is to help more young people with autism to make the move from school to college. Click here for more information.
Free Keyworking training CDC has developed training on the key working approach to supporting disabled children, young people and those with SEN, and their families. This training is designed for a multiagency group of professionals from across health, education and care and builds on learning from the Early Support Programme. Click on the dates below to book your free place: •
London - January 19
•
Cambridge - January 26
•
Manchester - February 8
•
Birmingham - February 12
•
Bristol - February 15
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Short Breaks Partnership Welcome to the third edition of the Short Breaks Partnership bulletin I’m delighted to introduce the third edition of our Short Breaks Bulletin. Our partnership are all passionate about the value of short breaks and the enormous difference they can make to extraordinary families trying to live ordinary lives. I’m the Director of Development and Engagement at Contact a Family. It’s our role to convene the partnership and our particular expertise is in working with parent carers. We support a network of Parent Carer Forums in every local authority area of England, and short breaks are a hugely important element of their focus. That’s why I’m so delighted this bulletin includes great news from Hampshire, where the Parent Carer Network have been instrumental in helping the County Council to reconsider proposed cuts to services in 2016/17, leveraging the power of their networks to ensure parent carer voices were adequately heard and the impact of the proposed cuts was fully understood. You can read the press release here. The County Council also deserve credit for remaining open to change, particularly in the face of an extremely tough settlement for Local Government as outlined in the Chancellor’s Autumn Statement in November. ‘Co-production’ is the mantra of Parent Carer Forums, and we believe these challenging budgetary decisions are best made through this inclusive, respectful approach to local partnership working. At Contact a Family our experience has taught us that when it comes to what families really need, they themselves are the real experts. So the theme of this bulletin - choice and control, with a particular look at personal budgets – is very apt. Within you will find a host of useful articles and resources designed to help families, professionals and statutory agencies. We very much hope you enjoy it. If you’d like to subscribe to this bulletin and get it delivered direct to your inbox please contact us as at shortbreaks@ncb.org.uk. Alternatively you can follow us on twitter at @SBPartnership, and if you have a particular wish for what you’d like to see in short breaks this year please tell us using the hashtag #SENDreams2016. On behalf of the Partnership, Gethyn Williams Director of Development and Engagement at Contact a Family
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In this edition... Short Breaks and Personal Budgets
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Good practice in short break provision 8 Made to Measure: Pooling Personal Budgets Increased Choice and Control through Personal Budgets Putting the Views of Children and Young People into Action Commissioning to Support Personal Budgets Information, advice and support 10 Together for Short Lives: Personal budgets for life-limiting conditions SENDirect: Personal Budgets - why is take up so low? Get involved 12 Share your experiences of short break provision Contact details for getting advice and support
What the Short Breaks Partnership is providing The Short Breaks Partnership is a consortium of four organisations; Contact a Family, Council for Disabled Children, Action for Children and Kids. The partnership offers a range of information, resources and support to parent carer forums, children and young people, commissioners and short breaks providers.
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The Legal Landscape in Short Breaks Services and Personal Budgets by Steve Broach, Barrister, Monckton Chambers Where local authorities or NHS bodies are responsible for meeting a disabled child or young person’s needs for short breaks, this responsibility is now often discharged through a ‘Personal Budget’. In short, although different legislation defines the terms in slightly different ways, a ‘Personal Budget’ is an amount of money identified by the public body to deliver agreed provision. One mechanism to deliver a ‘Personal Budget’ will be a ‘direct payment’. This is where the money to purchase the service is transferred to the disabled person or family, who then commission or arrange the required services themselves. Other personal budgets will be ‘notional’, i.e. held by the public body who the commission the service in partnership with the disabled person or family. Finally, a personal budget may be wholly transferred to a third party, for example a local voluntary organisation. In whatever format they are delivered, the purpose of Personal Budgets is to achieve greater choice and control over provision for disabled children, young people and families. Personal Budgets are particularly relevant to children and young people who have Education, Health and Care Plans, see Children and Families Act 2014 section 49. The SEND Code of Practice states as follows at para 3.38: Young people and parents of children who have EHC plans have the right to request a Personal Budget, which may contain elements of education, social care and health funding. Partners must set out in their joint commissioning arrangements their arrangements for agreeing Personal Budgets. They should develop and agree a formal approach to making fair and equitable allocations of funding and should set out a local policy for Personal Budgets that includes: • a description of the services across education, health and social care that currently lend themselves to the use of Personal Budgets • the mechanisms of control for funding available to parents and young people... • clear and simple statements of eligibility criteria and the decision-making processes that underpin them. In order to make this happen, the Code of Practice (para 3.39) imposes a number of process requirements on local authorities and partners, including that there is a Personal Budget pathway developed within the EHC needs assessment and plan development process locally, and that partners ‘identify how the new joint commissioning strategies1 will support greater choice and control year on year, as the market is developed and funding streams are freed from existing contractual arrangements’. Personal Budgets are also achieving greater prominence for children and young people with complex health needs. Since October 2014, disabled children and young people who are eligible for continuing care have had a right to have a ‘personal health budget’. There is
1 Required by Children and Families Act 2014 section 26.
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detailed guidance from NHS England on how this right should be realised2. There may be ‘exceptional circumstances’ (guidance p15) where a personal health budget can be refused; the guidance suggests this could be ‘due to the specialised clinical care required or because a personal health budget would not represent value for money as any additional benefits to the individual would not outweigh the extra cost to the NHS’. From the perspective of disabled people and families, two important questions often arise in relation to Personal Budgets: 1. Can the funding be accessed as a Direct Payment? 2. At what level should the Personal Budget be set? The answer to the first question depends on which statutory agency is responsible for funding the service. In relation to short breaks which are provided by the local authority under its social care duties, it is likely that there will be a right to have the Personal Budget amount paid as a direct payment. The statutory scheme governing local authority direct payments for disabled children derives from CA 1989 s17A3 and has been fleshed out by regulations4 and detailed guidance5. Under regulation 7(1)(c) of the 2009 regulations, local authorities are under a duty to make a direct payment where: • • • •
the parent6 appears to the authority to be capable of managing a direct payment by themselves or with such assistance as may be available to them; the parent consents to the making of a direct payment (local authorities cannot insist that a person has a direct payment); the authority is satisfied that the person’s need for the relevant service can be met by securing the provision of it by means of a direct payment; and the authority is satisfied that the welfare of the child will be safeguarded and promoted by securing provision by means of a direct payment.
Importantly, direct payments cannot be used to purchase prolonged periods of residential respite care (being capped at a maximum of four consecutive weeks in any period of 12 months).7 Otherwise there should be no restriction on the type of services and support that can be purchased using a direct payment, so long as it is meeting the eligible assessed needs of the child or young person.
2 NHS England, Guidance on the “right to have” a Personal Health Budget in Adult NHS Continuing Healthcare and Children and Young People’s Continuing Care, September 2014. 3 In relation to social care services; there is now a separate scheme under the Children and Families Act 2014 and the Special Educational Needs (Personal Budget) Regulations 2014 governing SEN direct payments which is outside the scope of this article. 4 Community Care, Services for Carers and Children’s Services (Direct Payments) (England) Regulations 2009 5 Department of Health, Guidance on direct payments for community care, services for carers and children’s services England, 2009 (amended 29 October 2010). In relation to adults, the guidance has been replaced by the Statutory Guidance to the Care Act 2014 (Department of Health) Chapter 12 – but the 2009 guidance remains relevant to disabled children.
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6 Or young person aged 16-17. A different test is applied in relation to social care direct payments for disabled adults under the Care Act 2014. 7 Community Care, Services for Carers and Children’s Services (Direct Payments) (England) Regulations 2009 regulation 13.
In relation to short breaks funded by NHS bodies (typically CCGs) however, there is no right to have the Personal Budget paid as a direct payment. Guidance from NHS England8 sets out illustrative examples (at para 33) of why a CCG might decide not to provide someone with direct payments – for example, because ‘the benefit to that individual of having a direct payment for healthcare does not represent value for money’. The second question is the amount of any Personal Budget or direct payment. The short answer here is that the Personal Budget or direct payment must be fixed at an amount sufficient properly to meet the eligible assessed needs.9 Public bodies are of course entitled (and arguably required) to meet needs in the most cost-effective way. However fixed direct payment rates – for example on an hourly basis – will not be lawful if it is not possible to meet the assessed needs within those rates. Public bodies need to be careful therefore in using ‘resource allocation systems’ or ‘RASes’ when determining the amount of a Personal Budget or direct payment. In R (JL) v Islington LBC [2009] EWHC 458 (Admin), the Judge observed (at [39]) that that she found it ‘hard to see how a system such as this one, where points are attributed to a standard list of factors, leading to banded relief with a fixed upper limit, can be sufficiently sophisticated to amount to a genuine assessment of an individual child’s needs’. RASes should only be used as a ‘starting point’ to generate an ‘indicative’ amount, which may then need to be altered upwards (or potentially downwards) to ensure the eligible needs are met; see R (KM) v Cambridgeshire CC [2012] UKSC 23 at [28].10 Any Personal Budget set in relation to an EHC Plan (and arguably any Personal Budget for a disabled child or young person at all) must be set in compliance with Children and Families Act 2014 s 19. As most readers of this article will now be well aware, section 19 mandates regard to a range of matters, including: • the views, wishes and feelings of the child and his or her parent, or the young person; and • the need to support the child and his or her parent, or the young person, in order to facilitate the development of the child or young person and to help him or her achieve the best possible educational and other outcomes. These matters have to be kept in mind when decisions are taken on (for example) the amount of a Personal Budget and whether to make the funds available by way of a direct payment. Where direct payments are made, it is vital that parents are given proper support in relation to the obligations that come with them. These are addressed in detail in the guidance for social care direct payments issued in 2009 and amended in October 2010. See in particular the section headed ‘Specific delivery issues’ at pages 47-54. Written contracts should be provided for any support staff employed to deliver support via direct payments, and the guidance sets out the essential terms of such contracts at para 137.
8 NHS England, Guidance on Direct Payments for Healthcare: Understanding the Regulations, March 2014. 9 See for example regulation 10 of the Special Educational Needs (Personal Budget) Regulations 2014; ‘The local authority must ensure that the amount of direct payments is sufficient to secure the agreed provision’. 10 Although KM was an adult social care case, the same principle applies to the allocation of funds to a disabled child, whether by a local authority or NHS body.
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The guidance states at para 139 that ‘councils may wish to include a payroll service, which will take responsibility for administering wages, tax and National Insurance for the direct payment recipient’. Guidance is also given on the need for criminal records checks for anyone employed to deliver care via a direct payment. A further important consideration is now the potential requirement for direct payment workers to be enrolled onto a workplace pension scheme.11 Local authorities will need to advise parents and young people in relation to this complex issue via their direct payments support services. The guidance also deals with the question of local authority responsibilities to fund additional costs associated with direct payments: 114. In estimating the reasonable cost of securing the support required, councils should include associated costs that are necessarily incurred in securing provision, without which the service could not be provided or could not lawfully be provided. The particular costs involved will vary depending on the way in which the service is secured, but such costs might include recruitment costs, National Insurance, statutory holiday pay, sick pay, maternity pay, employers’ liability insurance, public liability insurance and VAT. Some councils have found it helpful to include a one-off start-up fund within the direct payments to meet these costs as well as other forms of support that might be required, such as brokerage, payroll services and Criminal Records Bureau checks on employees. A major area of concern for some direct payments recipients is the level of scrutiny afforded by the public body as to how the direct payments are used. The guidance on local authority direct payments states that: •
• •
•
•
Monitoring arrangements should be consistent both with the requirement for the council to be satisfied that the person’s needs can and will be met, and with the aim of promoting and increasing choice and independence (para 220). Councils should focus on achieving agreed outcomes, rather than on the service being delivered in a certain way (para 221). Councils should aim to ensure that the information that the direct payment recipient is asked to provide is straightforward and the least onerous possible, consistent with monitoring requirements (para 222). The fact that the council is making direct payments rather than arranging services itself does not affect its responsibility to review an individual’s care package at regular intervals (para 225). The frequency of monitoring will be dictated by the length of time the person has managed direct payments...and their particular circumstances. For children...reviews may be necessary more often so that the council remains satisfied that the direct payments promote and safeguard the welfare of the child (para 226).
11 See the guidance on this complex issue from Disability Rights UK, Factsheet F61 at http://www.disabilityrightsuk.org individual-employers-and-workplace-pension-schemes-personal-assistants
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In the light of the Children and Families Act, there is an obvious need for education, social care and health to join up funding in a co-ordinated Personal Budget, with some or all of the funds paid by a direct payment. In this regard the SEND Code of Practice states at para 9.111 that: Local authority commissioners and their partners should seek to align funding streams for inclusion in Personal Budgets and are encouraged to establish arrangements that will allow the development of a single integrated fund from which a single Personal Budget, covering all three areas of additional and individual support, can be made available. EHC plans can then set out how this budget is to be used including the provision to be secured, the outcomes it will deliver and how health, education and social care needs will be met.
Steve Broach is a barrister at Monckton Chambers who specialises in the law affecting disabled children and their families. Steve can be contacted at sbroach@monckton.com. This article is intended for general information and should not be relied on as legal advice. Case-specific advice should be sought in any particular case.
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Good practice case studies Made to Measure: Pooling Personal Budgets Made to Measure was a two-year pilot run in Trafford and Plymouth established to address the challenges of individual parents seeking to purchase services using their personal budgets. It sought to ease the difficulties of identifying suitable activities and the logistics of purchasing the services. The aim was to increase choice and control for families of disabled children by increasing their influence on market development and the provision of services that meet the needs of their children. At the end of the pilot independent research, conducted by The Centre for Child and Family Research (CCFR), at Loughborough University found that the experience of the parents involved in the project was overwhelmingly positive. The evaluation reported that participants found that through pooling their personal budgets they could access services and activities that were otherwise not available to them and a number of evaluation participants made reference to the potential to increase stability. To read the full story go to http://www.councilfordisabledchildren.org.uk/sbncasestudy9
Increased Choice and Control through Personal Budgets Middlesborough parent carer forum, Parents4Change, have developed positive working relationships with council officers, local politicians and Members of Parliament. They have proactively engaged with council work-streams and focus groups, and arranged regular conferences to increase awareness around disability and represent the views of families. Their feedback helped shape Middlesborough ‘Multi-agency Strategy for Children with Disabilities’ which included the appointment of a short breaks facilitator and tendering of a new short breaks service. Following a successful pilot programme with families the council was able to increase the offer of personal budgets for short breaks. This case study gives examples of how these changes have given families greater choice and control. To read the full story go to http://www.councilfordisabledchildren.org.uk/sbncasestudy10
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Putting the Views of Children and Young People into Action KIDS project Make it Personal (MIP3) has been working with groups of young people across 3 regions to form Young Peoples Engagement Groups (YPEGs). These groups have looked at the personal budgets and in particular how education budgets can help them reach their aspirations and goals. Young people are often not consulted about how the services they use and are designed for them are disseminated. At KIDS we are eager to hear their views and use these to design guidance in a format of their choice and share it in a way the will find accessible and useful. We have been working with them to inform our MIP3 guidance for young people including those with complex communication needs. To read the full story go to http://www.councilfordisabledchildren.org.uk/sbncasestudy11
Commissioning to Support Personal Budgets In the run up to, and since implementation of the Children & Families Act, the Council for Disabled Children has worked with commissioners to understand how they have put into practice the legal requirements of the new legislation as well as developing supporting resources. This case study will look at practice examples from areas across England where personal budgets are being used by families to access short breaks and how commissioners are working together across services and with families to design and deliver effective personalised support. Hear more from a family who have been able to use personal budgets to enable their young person with very complex medical needs to take part in camping trips, as well as find useful resources to support commissioning to support personal budgets. To read the full story go to http://www.councilfordisabledchildren.org.uk/sbncasestudy12
Tell us About Your Good Practice Examples The Short Breaks Partnership is interested in hearing from you if you have been involved in developing short breaks services, particularly if this has involved unique and innovative features, has demonstrated inclusive practice or has had a focus on personalised approaches. If you feel that you are able share examples of good practice in these, or other areas please contact us using the details below. Parent Carer Forums: Children and young people: Commissioners: Short Breaks providers:
ben.palmer@cafamily.org.uk lynn.horsfield@KIDS.org.uk shortbreaks@ncb.org.uk erica.whitfield@actionforchildren.org.uk 41
Personal budgets for life-limiting conditions By Together for Short Lives
Seriously ill children and young people - and their families - rely on frequent short breaks that can meet their often complex health needs. You can find out which organisations provide them in your local area on Together for Short Lives’ website. CCGs and local authorities should jointly commission short breaks for this group of children; however, only some families can access short breaks because not all health and social care commissioners work together to commission them appropriately. By offering more choice and control for children, young people and families, personal budgets could help them to buy the specialist short breaks which meet their assessed needs. Many children and young people with life-limiting conditions will be eligible for an education, health and care (EHC) plan and a personal budget. Some will have an NHS continuing care package which could include short breaks; if a child has a continuing care package, they have the right to a personal health budget. If a child does have an EHC plan and personal budget, any personal health budget they receive forms part of their overall EHC personal budget. However, it is possible that a seriously ill child may have a personal health budget even if they are not eligible for an EHC personal budget (if they are deemed not to have a special educational need). NHS England and clinical commissioning groups (CCGs) also, however, have the power to offer personal health budgets to anyone if they think the person will benefit. This means that a child or young person could potentially fund a short break using a personal health budget even if they do not have a continuing care package or an EHC plan. Together for Short Lives published our new Young Person’s Guide to Personal Budgets in England in November. Our easy to use guide aims to help young people decide if a personal budget is right for them. Leah, Heidi and Chris - three young people who understand the complexity of having a personal budget - help navigate the guide - sharing their personal experience of taking control of their lives and making the most of personal budgets. Together for Short Lives also provides three briefings on personal budgets for families and services at www.togetherforshortlives.org.uk/sendresources. This page hosts reports 42
from two personal budget workshops we have run to help children’s palliative care providers adapt to greater use of personal budgets. Together for Short Lives is the leading UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. We support families, professionals and services, including children’s hospices. Our work helps to ensure that children can get the best possible care, wherever and whenever they need it. Follow us on Twitter: www.twitter.com/Tog4ShortLives or on Facebook at www.facebook. com/togetherforshortlives
Personal Budgets - why is take up so low? By SENDirect SENDirect has been keeping a close eye on personal budgets. Thousands of families commissioning services on their child’s behalf could have a dramatic effect on the supply chain of services for disabled children. So why are so few parents taking up personal budgets? The research that we will be releasing in March will describe barriers for parents, providers of support and local authority professionals to using personal budgets, providing the variety of services families need when they need them, as well as highlighting excellent practice. To contribute to the research from your perspective just click on the role title above that applies to you. We are running 4 round tables across the country, bringing together professionals, parents and researchers to examine the evidence of need locally and regionally, and consider solutions for better meeting that need. The events are free to attend and all attendees will receive copies of our in-depth reports around short breaks, childcare sufficiency and access to personal budgets nationally. For venue details and to book your ticket please use the following links: York – 23rd February 2016 Exeter– 25th February 2016 Leicester– 1st March 2016 London – 3rd March 2016 There’s still a lot to learn about personal budgets, and the impact they could have. So let’s develop our practice together. Read more on our blog.
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About the Digest The CDC Digest is a quarterly round-up of all the essential policy, practice and other news involving disabled children and young people, and their families. You can download the latest issues from the CDC website. If you would like to be added to the list to receive this digest, email cdc@ncb.org.uk with ‘Subscribe to CDC Digest’ in the subject line.
About CDC The Council for Disabled Children (CDC) is the umbrella body for the disabled children’s sector in England, with links to other UK nations. We are the only national body that brings together the diverse range of organisations that work with and for disabled children to support the development and implementation of policy and practice. Our work impacts on over 800,000 disabled children and their families. CDC hosts Making Ourselves Heard, the IASS Network, the Special Educational Consortium, the Transition Information Network, Preparing for Adulthood, the Independent Support programme and the Every Disabled Child Matters campaign.
Find out more www.councilfordisabledchildren.org.uk www.facebook.com/councilfordisabledchildren @CDC_tweets www.linkedin.com/company/council-for-disabled-children
The views in this e-bulletin do not necessarily reflect the views of the Council for Disabled Children
....or contact us on cdc@ncb.org.uk or 020 7843 1900