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The voice of the disabled children’s sector December 2013

Winter 2013 Issue 36

Dear all, As another year draws to a close, we at CDC are left reflecting on 2013 and looking forward to 2014. 2013 has been challenging, as the level of system change has at times felt overwhelming. Families of disabled children have been affected by changes in school funding, health reform, welfare benefits and local authority cuts. Seeing the world from their point of view remains one of our roles. Stepping along the journey with both parents and young people is important to us as is seeing the opportunities that arise from change. The Children and Families Bill has, of course, dominated our days and moving forward into 2014 will remain one of our priorities. As you will see from our news stories we particularly welcome the Government amendments to the Bill and will be working with them as they digest the consultation responses to the Code of Practice and on implementation planning to make the Act a reality. So what for 2014? Our Christmas wish list is that the new Act is seized by all as a real opportunity for change in the outcomes of children and young people. That working with parents and young people in the partnership becomes the norm and that children with SEN and disabilities are seen as valued and their achievements and contributions celebrated. Finally can I wish you all a very happy, restful Christmas and New Year. Best wishes.

Christine Lenehan Director Council for Disabled Children


Contents Editorial




Ask the Minister section


The Children and Families Bill


Updates from CDC










Special feature: The Communication Commitment


Special feature: Family Fund Report: Tired all the time


Special feature: National Network of Parent Carer Forums


About the Digest



Ask the Minister Following the publication of the Autumn Digest our subscribers and members were asked to submit questions to Edward Timpson MP, Minister of Children and Families, on the SEN and disability reforms and other relevant policy developments. These questions were collated and sent to the Minister last month. The Ministers’ response to your queries follows below. What is the Department for Education doing to ensure that the reforms in the Children and Families Bill improve outcomes for children with learning disabilities whose behaviour is described as challenging? In particular, how do the reforms the Children and Families Bill link with the Department for Health review following the abuse uncovered at Winterbourne View? It’s vital that the needs of all children are picked up as early as possible and support is put in place. The SEN reforms are designed to support early identification and build support for children and young people with SEN around a common set of outcomes across education, health and care. They also require commissioners across education, health and care to work together to design integrated care pathways for those with SEN. Because there are often too few of these children and young people to make service provision possible at local authority / Clinical Commissioning Group (CCG) level, the SEN Code of Practice encourages areas to collaborate regionally to provide services, and refers specifically to this group of children and young people as an example of a group who would benefit from regional collaboration in this way. There are close links between the Department of Health and the Department for Education colleagues working on both the SEN reforms and Winterbourne View, and a joint presentation was given on this issue to the Learning Disability Programme Board (which works with other Government departments and interested parties to improve the health and wellbeing of people with learning disabilities). Children with SEN, whose parents are serving members of the Armed Forces, will be affected by the SEND reforms. Often children will be attending boarding schools in one local authority, with the parents and LEA responsibility in another area. Many armed Forces families also move at regular intervals. How will the reforms in the Children and Families Bill improve support to these families? We know that the mobility of Armed Services’ lifestyles can create difficulties in meeting the needs of children with SEN and I have met with the Minister in MoD to 3

discuss these issues. Children with SEN from Armed Services’ families will benefit from the reforms we are introducing, along with all other children with SEN. The new assessment arrangements for Education, Health and Care plans will take a more holistic look at a child’s needs, including any difficulties created by the nature of the parents’ employments. We have maintained the transferability of EHC plans in England in line with the arrangements for children with statements and so the children of service families will receive the provision that is set out in their plans when they move to a new local authority. The length of assessments is being reduced from 26 to 20 weeks and so the likelihood that assessments of children from service families being disrupted when they move will be reduced. When service families do move between local authority areas they will be able to see from the “local offers” what provision is available in the area they are moving to. In addition, for the first time and as a consequence of our joint Ministerial meetings, the SEN Code of Practice will include text on the children of service personnel with SEN. The Code is statutory guidance which schools, local authorities and others must take account of when they are making provision for children and young people with SEN. The text in the draft SEN Code of Practice, which is currently out to consultation, was agreed and largely drafted by the Ministry of Defence and Children’s Education Advisory Service (CEAS) within the MoD. It specifically focuses on the disadvantages which service children with SEN can suffer because of the armed services lifestyle. The text includes a link to CEAS, which provides advice to service families, including advice about the public funds available and arrangements for boarding placements for service children. The evidence from the piloting of direct payments for SEN suggests that most of the testing relates to things like school transport. Freedom of Information requests to pathfinder LAs show that the number of direct payments is very low, averaging from to 1 or 2 per authority. Does the Government think this is sufficient evidence to introduce direct payments for SEN? Does the Government think that all local authorities will be ready to implement this policy in ten months’ time? The work of the pathfinders has highlighted the absolute importance of considering a personal budget (including any direct payment) as an integral part of discussions around outcomes, needs and provision in the EHC planning and assessment process. The June 2013 pathfinder evaluation report notes that discussions around the use of SEN direct payments have driven developments in personalisation of education provision that would not have happened otherwise. The accelerated testing group of pathfinders, established 12 months ago in response to an interim evaluation report, has provided a number


of very powerful case studies on the use of direct payments for special educational provision, with parents talking of life changing experiences. A number of these are captured in the personal budgets information pack, available at www.sendpathfinder. That’s why, although demand for direct payments for SEN provision may be low in the first instance, we propose to roll out the option of a personal budget (including SEN direct payments) alongside the EHC Plan. Under our proposals for transition, currently out to consultation, EHC plans with the option of a personal budget will be available for new entrants to the system from September 2014. Transition for children and young people with statements or learning difficulty assessments will take up to three years and during this time we expect demand to increase as parents begin to see the benefits direct payments can bring and the new joint commissioning arrangements provide greater choice of provision. The June 2013 pathfinder evaluation report captured a snapshot of progress in pathfinders and former Individual Budget authorities at March 2013. Our learning has moved on significantly since March 2013 and the June evaluation is just one, albeit very important, source of information. The work of the accelerated testing group has gone beyond simple case studies and the consultation draft of the Code of Practice is a testament to the progress they have made. For example, the Code clearly explains how SEN direct payments can work within the school funding regime in a manner that does not cause uncertainty to school or college level budgets. The work has also led to a framework for implementation for personal budgets developed by In Control and SQW with the support of DfE. It’s available at www.,-young-people-and-families.aspx and provides a clear vision for how personal budgets will be delivered and experienced by children, young people and their families, with guidance and examples of how to go about the implementation and delivery of personal budgets at a local level. In addition, we’ve commissioned SQW, as part of the ongoing evaluation of the pathfinder programme, to deliver a thematic report on personal budgets in the summer of 2014. There is a new duty to deliver the health services in Education, Health and Care plans but it is not clear who makes the final decision about what goes into this section. How will parents be able challenge what is written in the ‘health’ section of Education, Health and Care plans and on what grounds? I’m confident that the new arrangements we’re introducing for the joint commissioning of education, health and care services will mean that fewer parents and young people will need to challenge decisions in future. Education, Health and Care (EHC) plans will be delivered in genuine partnership with children and young people with SEN and their parents, and


across education, health and care services, so they should understand and agree with the provision in their EHC plans, including on health. The EHC plan must contain all the provision reasonably required by a child or young person’s SEN. Where relevant, local clinicians, such as community paediatricians, will participate in the development of the child’s or young person’s EHC plan. CCGs must agree the health services in the plan, even though decisions may be made by a health professional, such as the designated health officer. In most cases therefore, a CCG may have minimal involvement in the process, as this will be led by clinicians. A CCG may well formally agree the commissioning of a service, especially to meet the complex needs of an individual, based on a consideration of their specific circumstances (particularly where a service does not appear in the local offer). As part of the joint commissioning arrangements between local authorities and CCGs, partners must have clear dispute resolution procedures where there is disagreement on the services to be included in an EHC plan. Where there is a disagreement, the local offer will be clear on how a complaint should be made. If they wish to do so, parents can complain to the CCG, working with healthwatch. If they’re still not satisfied, they can complain to NHS England, and ultimately the NHS and Parliamentary Ombudsman. We’re looking to improve the way parents and young people have access to information on routes of redress so that they don’t have to battle to find out. There will be new duties on local authorities to provide support to young people up to the age of 25, young people in apprenticeships, young people who are NEET etc… Where will the money come from to meet these new responsibilities? It’s important to recognise that these are not all ‘new’ responsibilities – local authorities already have duties [under Section 139A of the Learning and Skills Act 2000] to arrange Learning Difficulty Assessments for young people aged 16-19 who had a statement of Special Educational Needs at school and to support them while they remain in further education or training. For young people aged 19-25, they have the power to do the same. The legislation in the Children and Families Bill seeks to maintain that position and simplify arrangements through a single 0-25 system of Education, Health and Care plans. This will help ensure continuity of support from school into further education and preparation for adulthood. It’s also important to note that there is no entitlement to support up to age 25 – as now, local authorities in consultation with the young person, their parents and relevant professionals will have to reach a decision, based on a clear set of conditions, on whether an EHC Plan should continue to be maintained for someone aged over 18 on a case by case basis. The Department published an initial assessment of new burdens being placed on local


authorities as part of the evidence pack for the Children & Families Bill. We will revisit this assessment once the Bill has completed its Parliamentary passage, to take account of any changes. The net new financial burdens in 2014-16 will be met by Departmental funding which will be provided to local authorities in order to meet these costs. Costs beyond this financial period will be considered as part of the decisions for the next Spending Review. Will the Government accept the recommendation of the Joint Committee on Human Rights that the Bill should include the general principle of the need to “continue to develop an inclusive system where parents of disabled children have increasing access to mainstream schools and staff and which have the capacity to meet the needs of disabled children”? The Government takes very seriously its commitments towards disabled children and young people. But we don’t believe that it is necessary to add to the principles in clause 19, where the focus is on achieving the best possible outcomes for the child or young person, irrespective of the type of school or college they attend. We have taken a number of specific actions in support of inclusive provision: • extending the general principle of inclusion in mainstream settings in clause 33 of the Bill to young people in further education; • introducing, in 2012, the provision of auxiliary aids and services into the Equality Act reasonable adjustments duty on schools; • incorporating the key advice from the separate Inclusive Schooling guidance within the draft SEN Code of Practice, including detailed practical examples of the kinds of reasonable steps that schools, colleges and local authorities can take to include children and young people with SEN; and • taking a number of practical measures to improve the capacity of staff in mainstream settings to recognise and support children and young people with SEN and thus make provision more accessible and inclusive. These include funding new SENCOs to undertake the National Award for SEN Coordination; running a National Scholarship to support teachers and other staff to undertake professional development in SEN. More generally, local authorities, health bodies and providers of education and other services must comply with the provisions of the Equality Act 2010, including when carrying out their new functions to plan and commission services. We are considering the scope for improving links to the Equality Act duties in the SEN Code of Practice. What is the expectation on Health and Wellbeing Boards in relation to children and young people with SEN, as they are not mentioned anywhere in the Bill? Health and Wellbeing Boards (HWB) already have an important role in relation to the commissioning of services by CCGs and local authorities, and services for children and young people with SEN are no exception. The HWB provides a forum for local commissioners and Healthwatch, which will include local people, to come together to


consider local needs and priorities. The statutory SEN Code of Practice highlights that the HWB should maintain oversight of the arrangements made for SEN. The HWB leads the local assessment of need to produce a Joint Strategic Needs Assessment and a locally-agreed Joint Health and Wellbeing Being Strategy. Commissioners will draw on these when determining their commissioning plans – and the content of the local offer. The HWB also has a role in scrutinising commissioning plans. CCGs have to involve HWBs in preparing or revising commissioning plans, and consult them about how well their plans and their work take account of the local strategy. NHS England will also ask the HWB for its opinion on this in its annual performance assessment of each CCG. What can local authorities do if a maintained school or academy no longer wants to host a resourced unit? How do the funding changes affect resourced units? A resourced unit is part of the established local authority (LA) pattern of provision, and therefore it is the local authority which must ultimately decide whether to change its local provision. Where a school or academy indicates that it no longer wishes to host a resourced unit, there needs to be a dialogue between the school / academy and LA to understand the reasons why this might be the case, and explore what further actions are needed to support the school / academy in its hosting arrangements. Where the LA agrees with the school / academy that it should cease to host the provision, the LA needs to consult formally on a proposal to change the nature and / or location of the provision. Clearly, where the LA continues to name a school or academy that is hosting a resourced unit in a statement (or in a EHC plan), then that body will continue to be under a duty to admit and use its best endeavours to make the provision described and the local authority will have a duty to ensure the special educational provision in the plan is made. The funding reforms make delegated amounts clearer, with specialist SEN resource recognised at the higher level of £10k per place as part of the school’s budget share. The implications for individual schools and the way in which additional funding is allocated will vary depending on other local factors. These need to be worked through locally in the context of delegation decisions. Any significant changes to specific SEN provision will remain subject to the appropriate statutory processes. The local offer will in future provide a clear way to set out what each school offers for pupils with SEN, including specialist resource.


The Children and Families Bill Contents of this section Key announcements The draft SEN Code of Practice Resources on the reforms

9 11 12

Key announcements Government announces inclusion of all disabled children in the Children and Families Bill On 12 December 2013 the Government amended the Children and Families Bill to include disabled children and young people within the scope of the Bill. Previously the Bill covered only children and young people identified as having a special educational needs; the amendments mean that disabled children will now be included in a number of clauses in the Bill including the local offer and local joint commissioning arrangements. The decision to include disabled children has been warmly welcomed by the voluntary and community sector. The Government amendments can be found at this link.

Implementation pack on SEN reforms sent to all local areas On 9 December 2013 Ministers Edward Timpson (Department for Education) and Dan Poulter (Department of Health) wrote to local authority and health leaders about the special educational needs (SEN) reforms.  In their letter the Ministers request these individuals work to ensure that the SEN reforms are implemented in a way that will deliver maximum benefits for local areas and for families and young people.   Accompanying the letter is an implementation pack outlining the vision for the reforms and with information for strategic leaders. This pack includes:


Key questions

A timeline for implementation

Information on the resources and support that can be accessed from a variety of organisations

Examples of best practice The letter also confirms that the Pathfinder Champion programme will continue until March 2015.  You can view a copy of the letter here and the implementation pack documents at this link.

The pack includes a diagram outlining key dates and activities in the SEN reform process

The letter has been sent to chief executives of local authorities and clinical commissioning groups, chairs of health and wellbeing boards and lead members.

Announcement on creation of SEN reform grant At the Local Government Association (LGA) conference on 9 December 2013 Minister Edward Timpson announced the creation of an SEN reform grant to local authorities to support them in implementing the SEN reforms. The grant, worth £70 million, is to be taken from the £150 million in funding previously titled the early intervention grant (EIG) that will be given to local authorities in the next financial year. The Minister’s speech at the LGA conference can be found at this link.

Government letter on SEN Pathfinder Programme Officials from the Department for Education and Department of Health have written to all Pathfinders setting out the next steps for the Pathfinder programme after March 2014. The letter includes information on funding for 2014-2015 and the government’s plan for support for the Pathfinder Champion programme and wider implementation. It also confirms that the Pathfinder Champion programme will continue until March 2015. View a copy of the letter at this link.

The Pathfinder Information Packs are due for release shortly. These packs contain best practice, case studies and updates from the SEND Pathfinders on key aspects of the Bill including Education Health and Care Plans and joint commissioning. Visit to download the latest version of the packs. 10

The draft SEN Code of Practice CDC’s response CDC has submitted to the Department of Education our response to the draft SEN Code of Practice. The document is based on the comments sent to us by members both at our seminar on the Code of Practice on 7th November and following this event. View a copy of our response. In our response we welcome some particular aspects of the Code including the participation of parents and the aspiration to bring together education, health and care. However we raise several significant concerns including that the Code doesn’t speak clearly to a number of key audiences and that there are some key aspects of the law that are not explained in the current draft including the local authority duty to identify children and young people with SEN and what this will look like when it is implemented. In addition to CDC’s response, consultation responses have also been submitted by our National Parent Partnership Network (NPPN) and by the Every Disabled Child Matters (EDCM) campaign as well as a statement from the Special Educational Consortium. As the Special Educational Needs (SEN) and Disability Strategic Reform Partner to the Department for Education we will continue to work with Department as they respond to consultation and will keep you informed as this work develops.

Young people’s consultation The government has launched a consultation aimed specifically at young people on the draft SEN Code of Practice. This consultation closes shortly on 20th December. CDC worked with government to write two guides for young people on the Code; one for young people aged 11 and under and the other for those aged up to 25. We have also produced a session plan for professionals to help them support young people to explore questions raised by the SEN reforms. You can use the guides and session plan to support the young people you work with to respond to the consultation. Download these resources free at


Resources on the reforms Our helpful resources on SEN and disability policy

As Strategic Reform Partner CDC is running a ‘Countdown to Change programme,’ developing and collating information highlighting key aspects of the SEN reforms. We have produced a handy information sheet highlighting a selection of free key resources produced by CDC and our partners highlighting different aspects of changes to SEN and disability policy. This sheet includes: •

A checklist on drawing up Education, Health and Care plans

A slide pack by the Department for Education on implementing the reforms to SEND

FAQs on SEN and disability reforms

You can download this information sheet listing all of these free resources at

New resources: The SEN reforms: what you need to know and what you need to do – information for schools We have produced a briefing designed to support schools in preparing for the SEND reforms. Our briefing outlines the key changes the Children and Families Bill intends to make to SEN support including:


The replacement of School Action and School Action Plus with SEN support, a graduated approach to identifying and meeting SEN, with schools involving parents

The replacement of statements with Education, Health and Care (EHC) assessments from September 2014

A requirement to develop a Local Offer which sets out what all local agencies are expected to provide including what schools are expected to provide from their delegated budget, their ‘notional SEN budget’.

The briefing includes a timeline highlighting key dates where the SEN reforms will have particular implications for schools and Academies as well as information on where schools can go for information and support. You can download our ‘SEN reforms: what schools need to know and what they need to do’ information sheet at

The SEN reforms: what you need to know and what you need to do – information for further education providers CDC has worked with our partners in the Association of Colleges, Preparing for Adulthood and Natspec to produce a briefing designed to support further education (FE) colleges and approved independent specialist providers in preparing for the SEND reforms. The briefing outlines the new duties on FE colleges and ISPs from September 2014 including that: •

The definition of SEN is extended to include young people up to the age of 25; the definition includes ‘learning difficulties’ and ‘disabilities’.

FE colleges and ISPs will be required to ‘have regard to’ the new Code of Practice.

FE colleges and ISPs will have a duty to admit students if the institution is named in an Education Health and Care plan.

FE colleges and ISPs, along with others, will be under a duty to co-operate with the local authority to identify and meet the needs of young people with SEN.

You can download the ‘SEN reforms: what further education providers need to know and what they need to do’ information sheet at



find further information on the Children and Families



You can find further information on our work as Strategic Reform Partner at


An update from CDC CDC starts counting down to implementation In September we hosted a ‘Countdown to Change’ event which brought together over 65 delegates from partners responsible for implementing the SEN and disability reforms of the Children and Families Bill. At the event we looked at what is required of each of us as we countdown to change one year from the implementation of these reforms.

Our Special Educational Consortium celebrates its 21st anniversary It is 21 years since the Special Educational Consortium (SEC) was first established by the Council for Disabled Children and on the 4th November SEC held a parliamentary reception to mark this important milestone and celebrated what they have achieved. SEC is a consortium of the voluntary sector, education providers and professional associations who work together to protect and promote the interests of disabled children and children with special educational needs. Over the past 21 years, SEC has worked on issues affecting children and young people with SEN during the passage of 18 pieces of legislation. SEC started with the Education Act 1993 and is Minister Edward Timpson and SEC Chair still going strong on the Children and Families Bill which is Julie Jennings cutting SEC’s birthday cake currently in Parliament. Find out more about what SEC have achieved over the past 21 years.

New training for parents of disabled children on engaging with health services We have developed an innovative new training programme for parents of disabled children. Funded by the Department of Health, the Expert Parent Programme draws on current evidence of the positive impact of parent led training and will empower parents of disabled children and young people to become more confident and resilient when engaging with health services. Developed by parents for parents, the Expert Parent Programme is delivering a limited number of training courses organised and delivered by experienced parent trainers on a regional basis. Check out the Expert Parent Training Course Page for more information about how to find out about training in your area. 14

As the Expert Parent Programme develops there will be a chance for more parents to get involved in the programme in the capacity building stage of the programme in 2014. If you would like more information please contact Andrew Fellowes.

We’re supporting 20 organisations as part of Innovation and Sustainability programme The Innovation and Sustainability Programme is part of our work as Strategic Reform Partner and funded by the Department for Education. The programme is intended to support the development of capacity building across the voluntary and community sector as well as the implementation of the government’s proposed SEN and disability reforms. Applications were open between June and September, and tt the final count we received over 200 applications featuring a wide range of creative ideas linking to the SEN and disability reforms and leading to more sustainable ways of working. The successful 20 projects were selected as they were particularly innovative, clearly demonstrated how they will increase the organisation’s sustainability and had a focus on the participation of disabled young people and those with SEN and families within their work. The selected organisations range from Decipha based in North London who will be running a leadership programme for young people 19-25 with life-limiting conditions; to Sign Hi Say Hi! in Blackpool who are running workshops for young people to engage them in development of their local offer. A full list of grant recipients, and information on their projects, can be found at Both CDC and the Department for Education are delighted to have the opportunity to support so many great projects.

Help to develop new materials for young people on the NHS Constitution CDC are launching an exciting new 3 year project, funded by the Department of Health, to help children and young people understand their rights when using the health system by promoting the NHS Constitution. The Our Rights, Our Voice project will work with children and young people who experience health disadvantage to develop innovative resources that explain the rights in the NHS Constitution in a way that is accessible and relevant to them. This work buildes on the Children and Young People’s Health Outcomes Forum report recommendation that the NHS Constitution be promoted to children and young people. It aims to help ensure the NHS Constitution can make a real difference for children and young people. 15

As the project develops we will also be working with health professionals in local areas to identify what barriers they face in supporting children and young people’s rights in their local areas, and how these can be overcome. If you are interested in contributing to this important project and work with children and young people who would like to take part in a focus group or join the advisory group please get in touch with Andrew Fellowes.

The Children and Families Minister visits CDC offices

In November CDC hosted a visit from the Children and Families Minister Edward Timpson who came to the Council for Disabled Children offices to meet the staff team and find out about the many projects the CDC staff team undertake, including our work on the Children and Families Bill and the implementation of the SEN reforms. The Minister met with each of CDC’s networks to find out about their particular responsibilities, including the Early Support team who talked about key working and culture change and our health team who spoke about their work with key health bodies on joint commissioning arrangements. He also spoke with our participation team about their work with EPIC, the young people’s group advising government on the reforms.

We’re recruiting We are looking for a new Senior Communications and Membership Officer. You will need to have an interest and expertise in relationship management, information sharing and the development of policy and practice. You will need to be experienced in maintaining and developing online and digital presence (including maintaining websites, creating new content and managing social media). This is an exciting chance to work across the voluntary sector and directly with national government in communicating the future of SEN and disability support. For more information visit Closing date: 9am, Tuesday 7 January 2014.



Consultations Special Educational Needs (SEN) Code of Practice: under-16s Department for Education and Department of Health Closing date: 20 December 2013 DfE and DH are consulting young people on a new code of practice and on replacing SEN statements with 0 to 25 education, health and care plans. View the consultation for under 16s here and the consultation for young people aged 16-25 here.

National curriculum reform (England): KS4 English and mathematics Department for Education Closing date: 3 February 2014 Consultation on key stage 4 English and mathematics programmes of study. View the consultation.

A people powered NHS NHS England Closing date: 18 March 2014 Involving and engaging patients, service users, carers and the public in shaping our NHS for the future is a vital part of NHS England’s vision and approach. NHS England is committed to engaging with patients, carers and the public in a wide range of ways. NHS England will be developing approaches and networks to ensure that people’s input can be sought, heard and acted on. We are determined to ensure that people’s voices are at the heart of transforming healthcare services. View the consultation.


United Nations Convention on the Rights of the Child consultation The United Nations Convention on the Rights of the Child (UNCRC) is an international human rights treaty that grants all children and young people (aged 17 and under) a comprehensive set of rights. The UK is due to submit its fifth report to the UNCRC in early 2014 and government have called for views on their draft periodic report. The Every Disabled Child Matters Campaign have worked with the National Children’s Bureau to produce this response to the call for views.

Local Government Association conference on SEN reforms On 10 December the Local Government Association held an event in London for all local authority heads of leaders, elected members and health and wellbeing board representatives on the SEN reforms. The focus of the day was on getting ready for the implementation of the reforms. Edward Timpson, Minister for Children and Families gave the key note address where he outlined the key aspects of the reforms and the government’s case for change. The Minister’s speech can be viewed here. CDC Director Christine Lenehan also spoke at the conference, outlining what key questions leaders should be asking themselves to ready themselves for the reforms. The presentations from the event, include the one given by Christine, can be found at this link.

Autumn Statement 2013 On 5 December 2013, the Government published the 2013 Autumn Statement. This included a number of significant announcements including a new cap on overall government spending on welfare benefits which will apply from 2015.

Revised timetable for introduction of universal credit The government has announced a new timetable for the introduction of universal credit which means that this new benefit won’t now apply to families in most parts of the country until 2016.

Call on Prime MInister to clarify ‘bedroom tax’ confusion The Every Disabled Child Matters Campaign, Contact a Family and a number of other key disability charities have written to the Prime Minister asserting that statements from government claiming disabled people are exempt from the bedroom tax do not reflect the reality of government policy.

2014 to 2015 revenue funding: guide for local authorities The government has published guidance to help local authorities and their schools use the new funding system for 2014 to 2015.


Practice Winterbourne View Action CDC members Mencap and the Challenging Behaviour Foundation are asking supporters to question their Health and Wellbeing Boards about what’s changed following the uncovering of abuse at Winterbourne View.

Autism becomes clinical priority In response to Push for Action, a campaign from the National Autistic Society, the Royal College of GPs (RCGP) have announced that autism will be a clinical priority for 2014-17. This means that a specific programme will be rolled out to increase understanding of autism.

We want people to see things our way In October the Children’s Commissioner released a report on Disabled children and young people, rights and money entitled “We want to help people see things our way.” The report is a joint effort with the University of Central Lancashire, together they met regularly with a group of disabled young people and their families. The report aims to understand disabled children and young people’s experiences of living in poor families and the difference that having less money makes.

RNIB sponsor SEN academy A partnership between the Royal National Institute of Blind People’s (RNIB) Pears Centre for Specialist Learning and Three Spires School in Coventry will see the school converted into a special educational needs (SEN) academy.

Don’t leave parent carer’s behind Carers UK, Contact a Family and Carers Trust are calling on the Government to bring forward changes to the Children and Families Bill or the Care Bill to ensure that those caring for disabled or seriously ill children aren’t left with lesser rights to assessment and support. The Government is bringing forward new and very welcome rights for carers of adults through the Care Bill and for young carers in the Children and Families Bill. But parents caring for disabled children under 18 are being left out of these strengthened rights.

Stop the DLA Takeaway’ campaign from Contact a Family and The Children’s Trust Contact a Family and The Children’s Trust’s ‘Stop the DLA Takeaway’ campaign was launched towards the end of last year to call for changes in the Disability Living Allowance (DLA) regulations that suspend a family’s DLA payments when their disabled


child has spent more than 84 days in hospital or another medical setting. The charities have also compiled new research which reveals the impact of the 84-day rule on disabled children and their families, which is contained in a new report. The campaign urges the government to review and change this DLA rule to show that they are committed to helping the most severely disabled and the most vulnerable.

Can Do – opportunities from Leonard Cheshire Disability Leonard Cheshire Disability set up Can Do to offer opportunities to young disabled people aged between 16 to 35 in the community. We help to provide the skills and knowledge that enable disabled people to lead more independent lives. They can help you • Learn and develop a variety of new skills • Get involved in volunteering opportunities • Build self confidence and independence • Work with you to create a long term development plan recording your progress • Meet new people, and make new friends within your community • Raise awareness around issue that are important to you • They can provide training, expenses, and offer you support to co-ordinate your activities • Volunteering can be combined with study or work If you would like to know more about Can Do contact Michelle Impanni on 07500079529 or at

The Challenging Behaviour Foundation launches the Everybody Matters Campaign The Challenging Behaviour Foundation (CBF) and Frameworks for Change have made a new film Everybody Matters – which will be launched in January showing that people with learning disabilities and complex needs can be supported locally. The film was made to demonstrate that good local alternative ways to support people, in contrast to units like Winterbourne View, can be developed. Alongside the release of the film the CBF are running a national postcard and social media campaign asking families who care for people with severe learning disabilities what they want for the future of their relative and what needs to change to make a good local life happen for them. Find out more about the campaign.


Travel Training and Travel Buddying services Travel Training and Travel Buddying services to young people with special educational needs are available through charities and councils. A list of where to go for information on these schemes can be found here.

First Impressions, First Experiences! Scope are providing First Impressions, First Experiences! career and work training for 1624 year olds. The programme aims to develop employability skills, gain work experience and build confidence to make life changing career decisions. The project offers assessment, development training, work experience and one to one support.

UK Disability History Month 22nd November – 22nd December

UKDHM is an annual event creating a platform to focus on the history of disabled people’s struggle for equality and human rights. This is the fourth year it has been celebrated, following the success of previous years’ events. The theme for this year is ‘Celebrating our Struggle for Independent Living: No Return to Institutions or Isolation’. This will give the chance to explore the history of attitudes and how disabled people’s lives have been marked by change.

Early Intervention Project Most children display challenging behaviour during the “terrible twos,” then they develop a range of communication skills which enable them to get what they need. Many children with learning disabilities are left with the same needs as other children their age but are much less able to get them met. Challenging behaviour is often 21

communication of an unmet need. The Challenging Behaviour Foundation is working with CDC to deliver the Early Intervention Project (funded by the Department of Health). The aim is to facilitate improved early intervention across the country. For more information or to share any good practice examples please contact: Jacqui@,

Achievement for All - 2012/13 Impact Achievement for All is continuing to close the attainment gap. Currently in almost 2000 schools across England, the programme is having a profound impact on the progress and attainment of the most vulnerable learners- children identified with SEND, those eligible for free school meals and other children and young people looked after by the state. Its 2012/2013 impact report, launched at the Institute of Education, Achievement for All national conference in October, showed that the majority of vulnerable primary school pupils working with Achievement for All make better progress than national expectations for all pupils by 50%. The programme has reached 77, 296 targeted pupils in primary, secondary, special schools and PRUs, 69, 956 parents and carers, over 9000 school leaders and over 25,000 teachers. Findings highlight that with a whole school focus on aspirations, access and achievement - every lesson, every day, every week, every term- all children can achieve beyond expectations. For further information contact 01635 279 480 /

Unique Kidz and Co awarded Children in Need funding Unique Kidz and Co in Lancashire has recently awarded over ÂŁ75,000 by Children in Need. The funding will start from April 2014 and last three years and will be used to pay for current and new staff. Find out more about the charity.

EPIC interviews Ministers EPIC is a group of disabled young people supported by CDC to advise government on the changes to special educational needs and disability support. In October two members of the group interviewed Ministers Edward Timpson and Daniel Poulter to ask them how education and health services will work together to make sure young people get the right assessment and support. You can view a video of their interview at this link.


Resources Supported Internships Supported Internships are personalised study programmes based primarily at an employer’s premises. They are designed to better enable young people with severe learning difficulties and/or disabilities to achieve sustainable paid employment by equipping them with the skills they need for the workplace. The Preparing for Adulthood programme (PfA) has produced two videos about Supported Internships to give young people more information about this program. PfA have also written a factsheet which accompanies these videos.

Supported internship trial: an evaluation A supported internship programme includes on-the-job training, backed by expert job coaches and complementary college-based learning including access to relevant qualifications, where appropriate. This research report contains the findings from an evaluation of the trial.

Winterbourne View: Transforming Care One Year On The Department of Health report ‘Winterbourne View: Transforming Care One Year On’ outlines the progress made during the year since the publication of ‘Transforming care: A national response to Winterbourne View Hospital’.

Learning Disabilities Census Report This report from HSCIS provides information on hospital in-patients with learning disabilities in England.  The census was initiated by the Department of Health and carried out by the HSCIC. The report contains figures on such as how long service users have been inpatients and how far their ward is from their residential post code.

Basic symptom control in paediatric palliative care The Rainbows Children’s hospice have compiled comprehensive guidelines for treating a wide range of symptoms experienced by children with life-limiting or complex health conditions. The updated (ninth) edition reflects the changes and developments in children’s palliative care, as well as addressing gaps in guidance on key topics. There is a new chapter on end of life management – responding to the key concern of how to manage the final stages of a child’s life. There are also major rewrites to the pain and gastrostomy sections.


Five good communication standards The RCSLT have now published guidance on ‘Five good communication standards: Reasonable adjustments to communication that individuals with learning disability and/or autism should expect in specialist hospital and residential settings’ . The five good communication standards are intended as a practical resource to support families, carers, staff, professionals, providers and commissioners to make a difference to the lives of individuals using specialist residential services.

Overview of SENCO role Nasen has published a practical guide aiming to provide a strategic overview of the SENCO role. It includes four sections, each representing a different element of the SENCO role, a comprehensive list of resources and clear examples of best practice.

We want to help people see things our way A rights-based analysis of disabled children’s experience living with low income The Children’s Commissioner for England worked with the University of Central Lancashire to understand disabled children and young people’s experiences of living in poor families and the difference that having less money makes. Their findings can be found in the report “We want to help people see things our way: A rights-based analysis of disabled children’s experience living with low income” The Children’s Commissioner has also produced a version of their findings for children and young people.

Parent guide: About diagnosis Contact a family’s ‘About Diagnosis’ series deals with topics that may be useful to parents who are trying to get a diagnosis for their child. Each guide contains useful information and signposts to further sources of support for parents. The most recent are for those who have a child who either has a rare condition or an undiagnosed learning difficulty of health problem. Guide for parents and carers whose child has a learning difficulty or health problem, but do not know its cause. Guide for parents and carers whose child has been diagnosed with a rare condition or who think their child may have a rare condition.

My Choices – Relationships and Sex Education The My Choices film was created with disabled young people and professionals through the Department of Health Sex and Relationships programme at Disability Advocacy 24

Project. The film affirms disabled young people’s rights to sex and relationships’ services by providing thoughts and views of disabled young people and practical information.

Audiences access resource pack This resource by Shape provides information on getting into London, parking and using museums, galleries and theatres. Information is in accessible formats, aiming to increase participation by people with disabilities in arts and culture events. There are contact details about ticket deals, dedicated access booking lines and suggested websites for finding out about access.

Guide to dealing with bullying Contact a Family have produced a guide to dealing with bullying for parents of disabled children which contains information about spotting the signs of bullying, the action you can take, your child’s rights and stories and tips from other parents. Parents can feel a range of emotions when they discover their child is being bullied. While initial feelings may include isolation, anger, sadness and guilt, it is important for you to remember there is a way forward.

Activity pack for children, parents and teachers to ensure Year 6 pupils’ are ‘secondary ready’ I CAN, the children’s communication charity, has launched Moving On! this month - a new activity pack for year 6 children to support their transition into secondary school. There is also a Teacher Guide to support whole class or small group activities. Moving On! Student Activity Pack can be used with all children, including those with poor language skills and speech, language and communication needs (SLCN). Moving On! is available now from I CAN.

Special Needs Jungle Special Needs Jungle is an award-winning website and blog that offers information, informed opinion and resources about Special Educational Needs and Disability. The site was founded by Tania Tirraoro to record her SEN statementing experiences with her two autistic sons and now offers a wide variety of content. Named in The Times as a Top 50 site “To make you smarter”, its articles range from the SEN reforms, rare conditions and disability in childhood, parent stories and helpful advice. Special Needs Jungle has recently introduced a range of specialist columns and is soon to include its own SEN legal “Agony Aunt”. Guest posts from parents or practitioners are welcome. Find the site and sign up free at


Events Transitions for children and young adults with autism conference, 16 January 2014, Birmingham From £75 This conference, organised by The National Autistic Society, will help you to develop a greater understanding of how to support children and young adults throughout different stages of transition.

Special Educational Needs 20 January 2014, Manchester From £245 This conference, run by Capita Conferences, brings together leading schools, local authorities and individuals working on key areas including: introducing a single education, health and care plan, using the pupil premium to improve outcomes for students and designing and delivering the Local Offer alongside schools and colleges. Download the brochure on Capita’s website.

Autism in education: good practice in working with students with autism 21 January 2014, London Free The National Autistic Society in association with Axcis Education Recruitment, are running a conference for teachers and other autism professionals on the tools and strategies they need to support children with autism effectively. The workshops at the event will focus on a variety of topics of use to head teachers, teachers and TAs from both specialist and mainstream backgrounds.

Personal Budgets in health and care - integration, personalisation and towards implementation 23 January 2014, London £190 This conference is run by Westminster Health Forum and will be considering the key issues surrounding implementation and personalisation.

Autism and participation 28 January 2014, London


From £45 This conference, organised by The National Autistic Society, will be looking at a variety of aspects of participation by people with autism. The event is particularly unique as it has been developed in conjunction with and all presentations will be given by people on the spectrum.

School exclusions: Know your rights 30 January 2014, London £10 This seminar from Ambitious About Autism on exclusions covers the law around exclusions from school, for children and young people with and without a Statement of Special Educational Needs; how to access support for children and young people in school who do not have a Statement.

Sexuality and sexual behaviour in young people with learning disabilities 28 February 2014, Bristol From £50 This conference by Association for Child and Adolescent Mental Health will provide professionals a knowledge and greater understanding of sexuality, sexual relationships and sexual behaviour in young people with learning disabilities.

nasen Live 2014 21/22 May 2014, Bolton From £12 This two-day event provides: information on implementation of the new SEN Code of Practice; an opportunity to liaise with representatives from the DfE; a comprehensive seminar programme; free to enter SEN exhibition.

Free parent workshops Contact a Family are offering a range of free workshops for parent carers UK-wide on a wide of issues including: - coping and support the causes and impact of stress, tips and sources of advice and support and behaviour that challenges us - its impact on family life. Contact their offices for more.

Positive Behaviour Support Workshops The Challenging Behaviour Foundation run workshops to teach people how to use Positive Behaviour Support (PBS) to reduce challenging behaviour displayed by children or adults with severe learning disabilities. The workshops can be run at your organisation, workplace or support group.


Communication Commitment The Communication Trust, a consortium of nearly 50 voluntary and community organisations with expertise in speech, language and communication, has launched the Communication Commitment, a new interactive website for schools. It’s a simple way to ensure all pupils communicate to the best of their ability by developing a whole-school approach to communication. The Commitment helps schools to support all their pupils to communicate better, including those with speech, language and communication needs (SLCN). This aim is part of the Ofsted Framework and will help to prepare schools for the SEND Reforms, due to be implemented in September 2014. The Commitment follows a clear and straightforward three step process from initial planning to furthering best practice. It’s free to register, and once a school is signed up, they gain access to free information, toolkits, resources and a personalised Action Plan to develop their own approach. The Commitment has been developed in partnership with teachers, speech and language therapists, expert organisations This diagram illustrates the three step process involved in the Commitment and advisors to provide a whole-school approach to communication. It has been rigorously tested by the Trust’s Trailblazer schools to provide simple and practical support that improves outcomes for pupils. They are already hearing about fantastic impact an increased focus on communication in school has for staff and pupils; “I work with young people who have difficulties with their behaviour... putting speaking and listening at the heart of the school improved relationships and engagement for our young people.” “...staff who could see the value of the activities they had planned and how speaking & listening activities could play more of a role in their daily teaching.” “Through highlighting the need for speaking and listening we are developing the confidence of our young people” “The staff (as well as students) were engaged...both teachers and students think more creatively about their lessons.”


“Independence and equality are key for our students, which is why communication skills are so important for them... Students take part in the full range of subjects, but all lessons have the underpinning element of applying communication skills to prepare them for the ‘real-world’.” We want as many children and young people as possible to be supported to develop their communication skills. To do this we need as many schools as possible to commit and encourage others to take part - until every school in the country knows the importance of communication! We know how busy teachers are and how important the recommendation of a trusted fellow professional is. So we would be really grateful if you could help us spread the word to as many schools as possible so that every pupil is supported to communicate to the best of their ability. To help you do this we’ve produced two helpful resources you can download and share; - The Communication Commitment flyer - send this on to any schools you think might be interested in finding out more - Promotional toolkit - this toolkit contains all you need to spread the word about the commitment through your website, social media and newsletters. Thank you for your support in helping more schools commit to communication!

Visit the Communication Commitment site at


Family Fund Tired all the Time Report The Family Fund has recently published a new report on sleep difficulties faced by families with disabled children. For over 40 years the Fund has been providing grants to families of disabled children to meet a variety of needs – helping families to sleep better is one of the most crucial needs. The report, ‘Tired all the Time’ was presented on 16th October at the House of Commons where Edward Timpson MP, Minister for Children and Families said: “We welcome the report ‘Tired All The Time’ that identifies how sleep deprivation affects families and how the services provided by the Family Fund are working to help make things better.” This report reveals the impact of sleep difficulties on families capturing first-hand experiences of over 2,000 parents and carers raising disabled children across the UK. Key findings show: • Over 93% are up in the night with their children • 49% have health issues due to the lack of sleep • 22% have had relationship problems as a result • 11% experience tiredness at work • 15% are concerned about siblings and the wider family’s health • Almost 1/3 had not sought professional support. Parents, carers and the wider family members, including siblings are experiencing significant financial, social and emotional challenges as a direct result of not having enough sleep. It impacts on education and employment opportunities and many families reported that family health was affected. As one parent shared “I have had a seizure through lack of sleep” and another said “After 14 years without a night of solid sleep I wonder how long I can continue to care for him.” Families have three key needs: • To be listened to, believed and heard when they talk about sleep difficulties • Their concerns are acted upon at an early stage • Timely and regular support, not just one consultation, as sleep deprivation is often not a short term problem.


The report highlights a number of key actions the Fund would like to see taken forward including clearer pathways to support for families, better training for health and social care professionals and access to short breaks for those families who need it.

You can download a copy of Tired all the Time at this link. The Family Fund is keen to work with other Voluntary Sector organisations, to ensure the issue of sleep deprivation is kept on the policy agenda and to encourage families to ask for the help that they so desperately need. Already the report has received wide interest from a range of organisations and academic institutions. Front line staff told the Fund they are using it to influence the content of the Local Offer. It has even been cited in a child’s care plan by as evidence by a health care professional. Do get in touch if you have been able to use the report locally or nationally in your work. For further information or to discuss partnership working with Family Fund, email:


National Network of Parent Carer Forums The National Network of Parent Carer Forums is a national participation organisation that promotes strategic parent carer participation at all levels. Our members are local parent carer forums from throughout England and they are supported by Contact a Family’s Strengthening Parent Carer Participation Programme. For more information on how the Network is structured and how to find your local forum please visit our website Our core belief is that better solutions and systems will be designed by working in partnership with those communities that the systems are intended to support. Parent carers are an important resource in local areas, with a huge amount of knowledge and experience about the needs of their disabled children their families. It is essential therefore that parent carers have a voice in the development and implementation of the Special Educational Needs Reforms, both locally and nationally. Over the past 12 months the NNPCF has focused our efforts to promote co-production in Pathfinders and more recently in Pathfinder Champions. Earlier this year, in partnership with Contact a Family, South East Seven Pathfinder and the Department for Education, we produced a short film ‘Working Together – our experience of Earlier this year NNPCF worked with Contact a Family and the SE7 co-production’. The film shares Pathfinder to produce a short film entitled ‘Working Together’ experiences from parent carer forums and local authorities and health providers in the SEND pathfinder areas, and demonstrates why ensuring there is co-production between parent carers and professionals is essential. It gives real examples of how this has worked, and the impact it has had, and why those who have worked in this way would not go back. You can view the film here. We have also worked closely with the Department for Education on the development of the draft SEN Code of Practice and have been able to bring representatives from local forums together with representatives of the Department for Education, to share first hand their thoughts on what the new code needs to say. These meetings have


been exciting, productive and at times challenging, and are great examples of how those involved in the reforms can work together to secure better outcomes for children and young people with special educational needs. Now that we are in the implementation phase of the SEN reforms it is essential that this model of partnership working between parent carers and the organisations that will deliver the reforms, is seen to be working in all local areas. At our recent national parent participation conference, the Minister for Children and Families, Edward Timpson, stated ‘Change in the law isn’t in itself enough, this must go hand in hand with cultural change.’ The first step in this cultural change is for us all to move out of our carefully defined work areas and to work together. In our film about co-production you will hear how those who have tried this way of working saying that they will not go back to how it was before; parent carer participation is here to stay. With this in mind we are very pleased to announce that at our recent conference, the NNPCF became a constituted organisation. This important step will provide a sound basis for the continuing growth of the Network and enable us to ensure that parent carer participation becomes the norm rather than the exception.


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 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 Early Support, Making Ourselves Heard network, the National Parent Partnership Network, the Special Educational Consortium, the Transition Information Network and the Every Disabled Child Matters campaign.

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CDC Winter Digest 2013  

Council for Disabled Children's Winter Digest, published 12th December 2013

CDC Winter Digest 2013  

Council for Disabled Children's Winter Digest, published 12th December 2013