Norfolk County Council Children with Disabilities service. Short Breaks Services Statement FINAL. October 2013

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1 Norfolk County Council Children with Disabilities service Short Breaks Services Statement FINAL INDEX 1.0 BACKGROUND INFORMATION 2.0 NORFOLK S ELIGIBILITY CRITERIA 3.0 RANGE OF SHORT BREAK SERVICES 4.0 MEETING THE NEEDS OF FAMILIES 5.0 TRANSITION TO ADULTHOOD 6.0 SHORT BREAKS FOR THE FUTURE 7.0 REGULATIONS Appendix 1 - Norfolk Short Breaks Provision as at Sept 2013 Appendix 2 Case Studies from Norfolk families A) Helen B) Jack C) Henry Appendix 3 - Peer Review Report for Short Breaks Provider Re-charging our batteries never looked so much fun 1

2 1.0 BACKGROUND INFORMATION 1.1 Why produce a statement? Like each local authority, Norfolk is required to produce a Short Breaks Services Statement so that families know what services are available, how we determine eligibility for these services, and how the range of services is designed to meet the needs of families with disabled children in their area. [Paragraph 6(1)(c) of Schedule 2 to the Children Act 1989 requires local authorities to provide services designed to give breaks for carers of disabled children. Regulations relating to this duty came into force on 1 April 2011.] We want to ensure that families in Norfolk have clear, transparent and accessible information on the services we provide. The Short Breaks statement will be reviewed annually to ensure it is up to date with the relevant information and continually reflects the views of disabled children and their parents. 1.2 How the statement was prepared? This document was developed by Norfolk County Council s Children with Disabilities service with contribution from parents, disabled young people and professionals working in health, social care, education and the voluntary and community sector. The Version 3 updated Short Breaks Statement in 2013 has been further reviewed to reflect the changing landscape within Children s Services. Disabled children and young people themselves have not formed a specific reference or consultation group with regards to this document. Instead it was deemed more appropriate that the content and detail within the document is based on qualitative information and feedback gained directly from the young people themselves who access Norfolk Short Break services. The views of disabled children and young people in the context of this statement is detailed in Section 4.0 Meeting the needs of families This is a revision to the first Short Breaks Services Statement produced in October 2011 and reflects the ongoing and significant commitment to joint working with professionals and the crucial involvement of parents. The information contained within the Statement is a collection of detail from various elements of work that have been going on for some time plus additional information on universal provision, transport and transition to adulthood that were not included in the initial statement. Following feedback from parents we have also provided further clarity and detail in certain parts of the statement. 2

3 1.3 Who is responsible? It is the local authority s responsibility to produce the short break statement and the lead officer responsible for this document is the County Service Manager for Children with Disabilities in Norfolk 1.4 Where will it be published? The document will be published both on our Norfolk County Council s website as well as the local parents short breaks website Through our partnerships with parents and joint disability register we will ensure families can have access to a copy on request. In addition it will be available to all professionals working within education, health and social care on request or downloadable directly from the Norfolk County Council and the Children with Disabilities service websites. 2.0 NORFOLK S ELIGIBILITY CRITERIA Our vision for all children: We believe that all children and young people have the right to be healthy, happy and safe; to be loved, valued and respected; and to have high aspirations for their future 2.1 Rights and the Disabled Child Disabled children and young people have the same rights as other children and will be regarded as children first. Disabled children and young people have the right to protection from abuse and to be cared for within their families and communities wherever possible. Disabled children and young people s rights include the expectation that they will be able to access universal services in their local and wider communities. These services should, as far as possible, be inclusive and effective in meeting their needs. 2.2 Disabled Children are Children in Need Disabled children and young people are included within the group of Children in Need under Section 17 Children Act This requires the local authority to safeguard and promote the welfare of children within its area who are in need and so far as is consistent with that duty, 3

4 to promote the upbringing of such children by their families by providing a range and level of services appropriate to those children s needs. In relation to disabled children these services should minimise the effect of their disabilities and give them the opportunity to lead lives as normal as possible. In providing services, Children s Services makes a distinction between those disabled children and young people whose additional needs can be met within general Children in Need services, and those with significant additional needs requiring targeted input from the Children with Disabilities service. 2.3 Who is eligible for support from the Children with Disabilities service? The Children with Disabilities service is for the approximately 1.2% of children and young people whose impairments and related high level support needs severely impact on their quality of life and those of their carers and family members (DCSF 2008). Deciding whether a particular child or young person s disabilities have a severe impact on their quality of life is specific to their individual needs, circumstances and the perceptions of the child and their family. Therefore, what follows is local guidance to help staff establish whether individual children and young people meet the threshold criteria for the Children with Disabilities service, following appropriate assessment. To be eligible, the child or young person must have a physical or mental impairment that is substantial and permanent, where: Substantial means considerable or significant factors that are life changing or limiting, and likely to involve risk and dependency; and Permanent means existing indefinitely and unlikely to improve (allowing for the episodic / intermittent nature of some conditions). In addition, in order to demonstrate a level of impairment that severely impacts on their quality of life, the child or young person must meet at least one of the following criteria: Severe or profound learning disabilities Severe or profound physical disabilities Significant or profound sensory disabilities Multiple disabilities which together severely impact quality of life Complex long term health needs Severe or profound social and communication difficulties related to disability 4

5 Professional judgement will be used to clarify eligibility for support from the Children with Disabilities service in cases where there is uncertainty or dispute. 2.4 Other support available Disabled children and young people not eligible for targeted support may be able to access other services for children in need, specifically: Sensory Support Team for people with sensory impairments Point 1 - the new county wide tier 2 Child & Adolescent Mental Health Service providing emotional wellbeing for school age children and young people [Ormiston Children & Families Trust] Children in Need Teams Children s Safeguarding Teams where concerns exist for the safety and welfare of children and young people. Norfolk Family Focus - for families who are experiencing unemployment, poor school attendance or crime and anti-social behaviour. Families can also request an assessment of their disabled child s needs, which must include consideration of the carer s needs and family circumstances, by contacting Customer Services Centre Anyone with concerns regarding the safety and welfare of any disabled child should also contact the Customer Services Centre. Parents and carers can register their child on Norfolk s Register of Disabled Children and Young People via the Children with Disabilities Access and Services Team on Registration does not mean the child is eligible for support from the Children with Disabilities service. 2.5 Legal Context The Children Act 1989 (especially Section 17 Children in need and Section 20) forms the legal basis for the services provided via the Children with Disabilities service. Other legislation of particular relevance includes: Chronically Sick and Disabled Person s Act 1970 Disabled Persons Act 1986 United Nations Convention on Children s Rights 1989 Education Act 1993 Carer s (Recognition and Services) Act

6 The Human Rights Act 1998 Carer's and Disabled Children Act 2000 Children and Young Person s Act 2008 (Section 25 Short Breaks Duty) Equality Act 2010 Guidance of particular relevance includes: Children Act 1989 Guidance and Regulations Vol. 6 (Children with Disabilities) Framework for the Assessment of Children in Need and their families (DoH 2000) Aiming High for Disabled Children: Better support for families (HM Treasury/ DfE&S 2007) Aiming High for Disabled Children: Implementation Guidance (DCSF 2008) Short Breaks Statutory Guidance (DCSF 2010) Working Together (DfE 2013) 2.6 What support does the Children with Disabilities service provide? The Children with Disabilities service provides specialist support and services to eligible disabled children, young people and their families in Norfolk. We are made up of the Children with Disabilities Access and Services Team, the three local Children with Disabilities Teams, and the two Children with Disabilities Resource Centres. We provide a range of short breaks services (including a number contracted out to voluntary sector organisations), as required by the Short Breaks Duty (Children and Young Person s Act 2008, Section 25), as part of the wider family support services provided to eligible disabled children and young people and their families. The Children with Disabilities service offers occupational therapy support to families to improve functional skills and behaviour. Disabled children and young people requiring equipment and adaptations are referred to the Community Services Occupational Therapy Service. We work closely with the wide network of professionals and agencies across Children s Services, Health and the voluntary sector in meeting the needs of individual disabled children and their families. NHS Norfolk and NHS Great Yarmouth & Waveney both commission short break services for disabled children with health needs. Specific support is provided to help disabled young people and their families making the transition to Adult Services. 6

7 2.7 How to access support from the Children with Disabilities service The level and types of support and services provided to eligible disabled children and their families will vary according to their individual needs, family circumstances and existing support networks. There are three levels of support available within the Children with Disabilities service. These are coded by colour; Green, Blue and Purple. This approach [based on a model developed by Derbyshire Children s Services] aims to: Ensure a level of assessment in proportion to the disabled child and their family s apparent needs. Reduce the number of assessments the disabled child and their family experiences by utilising existing assessments more effectively. Make the decision making process regarding the support offered to the disabled child and their family following assessment transparent and equitable. The system is intended to be flexible and it is expected that children will move between levels of support as their needs change over time. Children with the highest levels of need will be prioritised irrespective of their age/race/religion/gender. Green Blue Purple Local Offer minimum level of up to 104 hours per year / 2 hours per week Short Breaks for all eligible disabled children and young people without further assessment Higher level of short breaks required than available through the Local Offer. Level of need will be identified using information provided with application. Complex needs requiring comprehensive assessment and direct support from social care professional. Substantial or complex package of short breaks and support agreed at Resource Allocation Panel. To access support from the Children with Disabilities service, parents and/or professionals can request an application pack from the CWD Access and Services Team by calling or ing: shortbreaks.pathfinder@norfolk.gov.uk The application form must be completed and signed by a referring professional who knows the child with the signature of the child s parent / carer. The completed application form must 7

8 be sent with supporting evidence to the CWD Access and Services Team for evaluation against the criteria set out in section 2.3 above. An initial decision on the outcome of an application for support is usually given within six weeks of receipt of the referral. If your child is eligible for support from the Norfolk Children with Disabilities service, you will be notified of the assessed service level; Green, Blue or Purple, and the amount of hours allocated to your child for the next twelve months. Depending on the service level allocated you can choose between local authority provided provision, contracted out provision and / or a Direct Payment. If you receive Green or Blue level services you will be contacted by the CWD Access and Services Team and advised about the short breaks options available for you. A Purple level service means you will be contacted by a social care professional from the local Children with Disabilities team who will carry out a more detailed assessment on your family s needs and advise on the short breaks options available for you. 2.8 Needs Led Assessment The level of assessment indicated by the child s apparent needs does not negate the duty of the Local Authority to carry out their own assessment of need. All disabled children and their families have a right to request an assessment by virtue of their disabilities under Section 17, Children Act All such assessments will be carried out in accordance with the requirements of the Framework for the Assessment of Children in Need and their families (DOH 2000). The impact of the child or young person s disabilities on family life will be assessed by considering: The child or young person s developmental needs The parent or carer s parenting capacity Family and environmental factors Assessments will include an assessment of the carer s needs and the impact of the child s disability on their siblings. Workers from the Children with Disabilities service will evaluate information gathered in the assessment alongside contributions from health, education and, if relevant, voluntary sector colleagues. The statutory guidance also requires local authorities to produce a care plan and provide the identified service. 8

9 2.9 Right to appeal and make a complaint All disabled children and their families have the right to appeal against the level of support offered following a full assessment of their needs. They will be provided with details of how to comment or complain regarding any aspect of the services provided by the Children with Disabilities service. As a service we value the opportunity to continually improve our practice through ongoing consultation with disabled children and young people and their families, staff within Children s Services and partner agencies. 3.0 THE RANGE OF SHORT BREAK SERVICES 3.1 What are short breaks? Short breaks come in all shapes and sizes and give the families of disabled children a break from caring responsibilities, as well as giving disabled children themselves the opportunity to engage in positive activities. They can be a break for the child away from the family or can involve supporting families to take a short break together, away from the routine of daily life. The aim is to provide a positive experience for all. They could last a few hours, a day, evening, overnight or for a weekend. They could take place in or away from the home. Our aim is to ensure that families with disabled children have the support they need to live ordinary lives as a matter of course. We recognise that all families are different, so they will need different levels of support and different types of short breaks depending on the age of their child. Some families may need more support because of their family circumstances; this may be for a short period of time or it may be for longer. 3.2 Developing short break services in Norfolk Short breaks provision available in Norfolk has been developed by listening to parents telling us what is most important to them. Through close and effective links with Family Voice 9

10 Norfolk and other parents we have been able to work alongside parents as partners in developing our short break services. During the three year Pathfinder programme April 2008 March 2011 in Norfolk there was a wide expansion of short break services through piloting, consulting and testing services based on families experience of what was needed most to support their family life. By April 2011, 1,838 children had received a Short Break service, a 143.8% increase from 2007/08 and very close to the target of 1,858, the 1.2% of Norfolk s child population with a severe disability. In order to sustain the services developed beyond March 2011, Norfolk undertook a comprehensive tendering exercise for short breaks during the summer and autumn of The exercise enabled Norfolk to sustain services from the short breaks element of the Early Intervention Grant. 2.6m a year funding for short break services across Norfolk for was allocated from this process. This tendering exercise heavily involved local authority commissioners, health commissioners, members from the Aiming High Team and three parents who jointly reviewed and assessed the bids that were received. All parties were integral into the decision making process for the services. 66 bids in total were evaluated of which 21 were awarded contracts of varying lengths between 1-3yrs. Service contracts with all short breaks providers are reviewed quarterly by an allocated Liaison Officer from within the Children with Disabilities service and annually by a Contract Review Group involving parents. In 2013/14 our financial commitment to Short Breaks remains unchanged. There has been further commitment to short break providers with extensions offered till March In 2013/14 one service contract has come to its natural cessation, The Benjamin Foundation Special Needs Youth Group in Wells next the Sea though plans are in place to reinvest resources freed up into additional short breaks in Norfolk 3.3 Services available Norfolk is proud to have a comprehensive range of high quality short break services to families across Norfolk including; Residential overnight stays 1:1 support in children s own homes 10

11 1:1 community outreach support Weekend and holiday playschemes, day care schemes and youth clubs Funding for 1:1 support in play groups or nursery Direct Payments The full list of short break services available is detailed in Appendix 1 Short Break Services Menu. This list includes details of in-house social care and health provision which sit alongside additional and existing short break service agreements that were not part of the tender exercise. Is there a cost to families? Families are expected to pay admission charges for their child, the same as anyone else, to access general leisure activities, sports clubs, hobby-based activities, out of school activities, art and drama clubs and uniformed groups like Scouts and Guides. Families may also be asked by short break providers, especially voluntary and charitable organisations, to pay a contribution towards play scheme / holiday activities, over and above the funding from Norfolk Children with Disabilities service. This will vary from 5-15 depending on the length of session and the staffing ratio provided at the group Any financial contributions made are a subsidy on the actual cost of the care being provided and usually cover aspects of the service such as mileage, activity costs, equipment, insurances etc. If you are in particular hardship and unable to contribute to the cost of a short break service you should firstly discuss this with the short break provider who may be able to offer a subsidy in particular circumstances. Direct Payments Direct Payments are payments paid by Norfolk County Council to the families of eligible children with disabilities to arrange their own short breaks care and support. They are not a benefit. They do not affect your benefit or income tax. If preferable, you can have a mix of Direct Payments and services we arrange. Direct Payments can be used to employ a personal assistant of your own choice for short breaks, rather than use a service directly provided by the County Council or one of its 11

12 contracted providers. So it is an alternative form of provision, rather than a service in its own right. Norfolk s Direct Payments scheme has a support service run by Equal Lives (previously known as Independent Living Norfolk (ILN) and funded by Norfolk County Council. Advisers can advise and help you to: Think about support you need to manage your Direct Payment Find personal assistants Organise your Direct Payments money Provide a payroll and money holding service, to assist with working out the money you pay for your support Be a good employer Advise on health and safety matters Keep records 3.4 Workforce development and training In order to ensure consistently high quality short break services are provided in Norfolk there is a long standing commitment to training and development of the short breaks workforce. Most contracted short breaks providers have their own budgets to provide specialist training for their staff and are required to keep this up to date and maintained to satisfy service standards. In addition to this, the Children with Disabilities service has provided or contributed to further specialist training of the short breaks workforce in 2013 including: Anaphylaxis Awareness Epilepsy Awareness and Management Paediatric First Aid Moving and Handling Gastronomy Care Understanding Autism Right From The Start Training (via SCOPE) Norfolk Steps On and Step Up (positive handling) Communicating with Disabled Children Training 3.5 Transport The provision of transport to access services is an important factor in a large rural county such as Norfolk. It is expected that in order to access specialist services provided by the 12

13 Norfolk Children with Disabilities service families should use their own transport and / or Disability Living Allowance to fund transport associated costs in accessing short break services. In some cases, contracted short break providers have the ability to offer support with transport where it is deemed appropriate or where there are exceptional family circumstances. In addition, funding from Norfolk County Council for transport may be offered if identified as part of the child s care plan. There are a number of charities which offer support with funding for transport and the Children with Disabilities teams can provide further information on request. 3.6 Universal services In addition to direct Short Breaks service provision, Norfolk has contributed to a number of Capacity Building service contracts aimed to enhance the quality of and access to short break services through regular training, support, advice and guidance for parents, specialist and universal providers. Disabled children have the same rights as other children and should be regarded as children first. They have the right to be able to access universal services in their local and wider community. These services should, as far as possible, be inclusive and effective in meeting their needs. The Children with Disabilities service has contracted with Momentum to further support this and to: Ensure universal providers, particularly smaller voluntary and community groups, have the appropriate training and support to effectively work with disabled children and young people; Ensure that parents gain the confidence to use smaller community based providers as an alternative and viable short break offer; Identify gaps in the training and development of service providers, raising awareness of the issues facing disabled children and young people in accessing universal services, and raising confidence among the families of what is available to them. 13

14 If you would like more information on universal services for your child, you can contact Momentum on: or by visiting Information on other services for children such as childcare, after school clubs, holiday activities and support groups can be provided by Norfolk County Council Customer Services on They are able to access the Family Information Service and the Family Service Directory and give details of services available near you. Alternatively the Family Service Directory can be accessed via the Norfolk County Council website MEETING THE NEEDS OF FAMILIES We will ensure that our short break services focus on improving the life chances of disabled children and their families through continuing to develop our strategy with parents and young people. We know that the views of families, both parents and children are essential for future success. We will therefore ensure our parent forums and children s consultation forums are supported and developed. We will continue to measure children s satisfaction, parental satisfaction and staff confidence and skill in meeting the needs of disabled children in a variety of short break settings. We will continue to monitor and record the views of children, parents and staff so everybody feels involved and supported and to ensure we develop a cycle of continual improvement. 4.1 What parents told us In Norfolk, ongoing support from our parent organisation Family Voice Norfolk has been integral in helping drive forward changes in short break services for families and their disabled children. We have also engaged with other parents involved in other disability groups across the county to shape the services we deliver. In partnership with parents, views have been gathered in a variety of ways including area parent forums, short break fayres, parent workshops, presentations to parents at events, parent speed dating session as well as the ongoing commitment of parent s involvement in various steering group meetings such as the Contract Review Group, Communications Group, Disabled Children s Strategy Group etc. From these various avenues parents have given us valuable feedback which has informed the changes we have made to services in Norfolk including: 14

15 Families would like a range of provision as parents can find themselves housebound and fear the school holidays but they also need to know that activities in place are appropriate for their child/young person and that the carers are suitably trained and supported. Would like consistency of carers not different people every time. Access to local youth provision is important and for this provision to accept their child positively. Sibling support - it can be stressful for siblings who often act as the advocates for their disabled peer. Services to be available as part of the care package not just at the point of crisis. Information needs to clarify what short breaks provision is, how families can access it and any restrictions to the type and number of short breaks a family can use. Help in the home is one important area to enable parents to be able to do the nice things with their child and family. Greater flexibility of provision such as out of hours help, care for siblings particularly while a child is in hospital and more young carers groups. Ensuring equity across the county, hence greater provision in areas such as west Norfolk. Full reports on the consultation activity with parents are available on request. Feedback from parents has lead to the development of a parent friendly short breaks website and the creation of a Short Breaks Family Guide with more detail on Short Break services and how they can be accessed. 4.2 What young people told us A variety of consultation exercises have been undertaken in Norfolk since April 2008 and continue to be developed by working with our contracted short break providers. In addition a group of Peer Reviewers (disabled young people) has been recruited and trained to review our contracted short break provision and offer valuable feedback to short break organisers. (See Appendix 3 for an example of a Short Breaks Promoting Inclusive Provision Review) 15

16 We feel it is fundamental to continue to ascertain the views, wishes and aspirations of our young people with disabilities in Norfolk. Some key feedback from young people which has driven our commissioning intentions includes; the opportunity to shop, gossip and talk to people and have somewhere to go. I like having a mix (of mainstream and specialist provision), otherwise I only see the same people again and again. I would be interested in a club that I could do some cooking, as I want to do that when I leave school as we could try it and see, if we (try it and) don t like it we know that we don t want to do it for a job. In addition to the views, wishes and aspirations for shorts breaks provision, young people also commented on independence and communication which illustrated that: The young people who took part in the consultation, on the whole, had difficulty understanding the concept of short breaks/respite care. 16

17 There seems a lack of information about what is available to young people. Young people had limited vision as to what they may be able to participate in so far as some activities were concerned. They were enthusiastic to meet new people who don t go to my school. Young people said there were barriers from parents around getting involved in activities; the issues included relevant training of workers, fear of being bullied, and enough staff for them to be able to take part in some activities and for some activities to be adapted to meet the needs of young people. Feedback from young people has led to the development of a young person friendly Disability Registration form, a young persons DVD on short breaks in Norfolk. 5.0 TRANSITION TO ADULTHOOD An eligible disabled child will continue to access support from the Children with Disabilities service until their 18 th birthday when they attain adulthood. From 18yrs, support with their social care needs is the responsibility of Adult (Community) Services. Adult Services have their own criteria and therefore not every young person accessing support from the Children with Disabilities service will automatically be entitled to support post 18. If you are a parent or carer of a young person with a Statement of Special Educational Needs and/or additional needs you will be supported in their transition into adulthood. The process of transition from a support package provided by Children s Services to Adults Services should be well planned with all the relevant agencies involved to support this process. The process should be started at Year 9 or when the young person reaches age 13 and has their Transition Review. Transition Reviews are designed to collect all the information that is important to your son or daughter and then develop a plan to help them achieve their future goals. The Transition Review will look at everything from hopes and aspirations to further education, leisure, health, employment and finance. It is the responsibility of your son or daughter s school to organise the Transition Review. The review meeting is crucial and you have the right to invite anyone you feel is important in shaping your son or daughter s life, from professionals to friends and relatives. 17

18 At the end of your son or daughter s first Transition Review you will receive a Transition Plan which will need to be reviewed and updated every year. All young people with a Statement of Special Educational Needs will be allocated a Guidance Advisor from Norfolk County Council. Your Guidance Advisor will work with you and your son or daughter s school to offer a free and impartial information, advice and guidance support service. They will attend both year 9 and year 11 reviews. If you have a Social Worker they will also support you through transition. Transition can be a period of significant concern and anxiety for families as the way services are managed and allocated change. Transition planning has been a key part of the Short Breaks commissioning focus and as a result there are a number of short break providers that specifically focus on supporting young people going through transition from aged 13+. (These are indicated in Appendix 1). The services they offer are intended to be age appropriate and encourage young people to develop their independence and life skills, maintain peer friendships and enhance social skills. Many of these services can continue to be available to young people beyond their 18 th birthday through a Personal Budget from Adult Services. A Personal Budget is where a young person s needs are assessed and they receive a budget for the year which they can choose how best to spend to meet their needs. The outcomes and how the money will be used to meet these needs are contained in a support plan. The young person will have greater control over deciding on services to meet their needs within the requirements of the agreed support plan. Creating the Support Plan helps with identifying what would be really helpful. For more information on Transition and the resources available to you, please visit oung_people_with_additional_needs/index.htm 18

19 6.0 SHORT BREAKS FOR THE FUTURE Two years on from the first Short Breaks Statement sees continued efforts to improve the quality, quantity and range of short break services for disabled children and their families in Norfolk continues. Through both formal processes and informal feedback we aim to ensure ongoing development, improvement and expansion of our services to disabled children and their families. Most services continue, funded by Norfolk s Early Intervention Grant with service contracts in place until March 2015 as well as a further 15 existing short break services (including NCC and NHS in-house provision). The CWD Access and Services Team, in partnership with colleagues from other agencies, remains responsible for the monitoring and reviewing the short breaks service contracts to maintain a consistently high level of service delivery across Norfolk. Key performance indicators and quality measures have been set for all providers illustrated within a Schedule 3 section of the service agreements. The progress on these measures are reported on and reviewed by the monthly Contract Review Group. The significant changes in service staffing continues to challenge the statutory, voluntary and independent sectors and the need for a service wide understanding of a flexible approach to ways of working with the Children with Disabilities Teams across the county continues to be embedded within our practice. A county wide approach to resource allocation started in the summer of 2011 has developed into common practice and enables consistent, swift and effective multi agency discussions and agreements for significant care packages. This includes a monthly multi agency Resource Allocation Panel which reviews complex packages of short breaks and / or social care input In everything we do, our work with parents as our key partners continues to help us drive this process through, openly and fairly for all families of disabled children in Norfolk. 19

20 7.0 REGULATIONS Regulations laid before Parliament under section 104(3A) of the Children Act 1989, for approval by resolution of each House of Parliament. The Breaks for Carers of Disabled Children Regulations 2011 In force with effect from 1 st April 2011: the Secretary of State for Education made the following Regulations in exercise of the powers conferred by paragraph 6(2) of Schedule 2 to the Children Act 1989 (1). In accordance with section 104(3A) of that Act, a draft of these Regulations was laid before Parliament and approved by resolution of each House of Parliament. Citation and commencement 1. These Regulations may be cited as the Breaks for Carers of Disabled Children Regulations 2010 and come into force on 1st April Interpretation 2. In these Regulations the 1989 Act means the Children Act 1989; carer means a person who provides care for a disabled child and who is (a) the child s parent, or (b) a person who is not the child s parent but who has parental responsibility for that child; and disabled has the meaning given in section 17(11) of the 1989 Act (2). Duty to make provision 3. In performing their duty under paragraph 6(1)(c) of Schedule 2 to the 1989 Act (3), a local authority must (a) have regard to the needs of those carers who would be unable to continue to provide care unless breaks from caring were given to them; and (b) have regard to the needs of those carers who would be able to provide care for their disabled child more effectively if breaks from caring were given to them to allow them to (i) undertake education, training or any regular leisure activity, (ii) meet the needs of other children in the family more effectively, or (iii) carry out day to day tasks which they must perform in order to run their household. 20

21 Types of services which must be provided 4. (1) In performing their duty under paragraph 6(1)(c) of Schedule 2 to the 1989 Act, a local authority must provide, so far as is reasonably practicable, a range of services which is sufficient to assist carers to continue to provide care or to do so more effectively. (2) In particular, the local authority must provide, as appropriate, a range of (a) day-time care in the homes of disabled children or elsewhere, (b) overnight care in the homes of disabled children or elsewhere, (c) educational or leisure activities for disabled children outside their homes, and (d) services available to assist carers in the evenings, at weekends and during the school holidays. Short breaks services statement 5. (1) A local authority must, by 1st October 2011, prepare a statement for carers in their area (a short breaks services statement ) setting out details of (a) the range of services provided in accordance with regulation 4, (b) any criteria by which eligibility for those services will be assessed, and (c) how the range of services is designed to meet the needs of carers in their area. (2) The local authority must publish their short breaks services statement, including by placing a copy of the statement on their website. (3) The local authority must keep their short breaks services statement under review and, where appropriate, revise the statement. [Hence this annual update] (4) In preparing and revising their statement, the local authority must have regard to the views of carers in their area. 21

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23 APPENDIX 1 - Norfolk Short Breaks Provision 2013 NB All contracts commence on the 1 st April and cease on the 31 st March unless otherwise stated * available post 18yrs More information on all providers is available for Provider Geographical area Service provision Contract details 1. About with Friends* 9+ North Norfolk Youth Groups Holiday activities Residential weekends 2. Churchill Park School West Norfolk Holiday activities Crossroads Care East Anglia Countywide 1:1 support in the child s home Direct Payments* Countywide 1:1 support from a In-house ongoing service provision Personal Assistant 5. Each Quidenham Countywide Hospice care for children joint NHS Norfolk funded with life limiting conditions 6. Eye Opportunity Group South Norfolk Pre-school group (in process) 7. Fakenham Children s West Norfolk Holiday activities Daycare Centre 8. Foxwood Countywide Residential stays In-house ongoing service provision 9. Hamlet Centre Trust* Central Norfolk Holiday Playschemes Saturday short breaks Early Support Opportunity Groups 0-5s Youth Groups 10. Harford Manor School Greater Norwich Holiday activities Equal Lives Countywide Support for Direct Payment recipients 12. Little Acorns Countywide Residential Stays Funded by NHS Norfolk and NHS Gt Yarmouth & Waveney 23

24 13. Marshfields Countywide Residential Stays In-house ongoing service provision 14. Mid Suffolk HOPS South Norfolk Holiday Playschemes Momentum Countywide Capacity Building Morley House Countywide Residential Stays Musical Keys Countywide Holiday activities NANSA* 11+ Greater Norwich Youth Groups Holiday activities Weekend activities 19. National Autistic Society West Norfolk Saturday Club NCH&C SB Home Based Countywide 1:1 support in the child s (also funded by NHS Norfolk) Nursing Team home 21. NCH&C Upton Road Greater Norwich Summer Holiday (also funded by NHS Norfolk) Playscheme Playscheme 22. Nelson Lodge Countywide Residential Stays 2004 December 2013 (in process) 23. Norwich City Community Countywide Holiday activities Sports Foundation* After school groups 24. Scope Inclusion Countywide 1:1 support to access universal services 25. Scope Family Help Unit South/West Norfolk Residential Stays Sensory Support Service Countywide Holiday and weekend (under discussion) activities 27. Shine East Norfolk Holiday Playschemes Youth Groups 28. Linked Families Countywide Family based overnights & In-house ongoing service provision day care 29. Squirrels Countywide Residential Stays Funded by NHS Norfolk 30. Supersports Kidz Club Central Norfolk Wheelchair basketball club

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26 APPENDIX 2 Case Studies from Norfolk families Case Study A Helen* Helen* is a young girl aged 15 years old. She lives with her parents and her brother in a small village in Breckland. Helen has a diagnosis of Epilepsy and Cerebral Palsy, and attends a special school full time. She has stated that she enjoys shopping, and she now exchanges money at the till independently and with confidence, something she would not do when she started with Scope Inclusion. Elaine* (Includer) and Louise* (Team Leader) encourage Helen to make her own choices on activities as she has a tendency to follow what other people are doing. Elaine and Louise have also noted that Helen appears much more confident and is projecting her voice easier as time goes by. Helen s mum stated at her review that Helen had enjoyed going out socially with another child, Joshua. Helen s mother also stated that the school have commented on how Helen has appeared much more vocal at school more recently too, which may or may not be related to her accessing positive activities independently outside of school and home with Scope Inclusion. Helen s mum explained how Helen is naturally quite shy and she believes that going out with Joshua has helped her a lot. She seems to be coming out of her shell. There was a time where Helen s activities were allocated at the weekend. However, this was not working for her. It was noted that she appeared to find it very difficult to separate from her parents when she was there. Elaine and Louise made a decision to move her activities to weekdays after school, to ensure that her time with scope was positive for her. Helen has since been finding her activities fun again, and appears to look forward to Scope picking her up from school with no anxiety present. Helen has expressed a love of singing and dancing, and the next aim is to look out for dancing groups that Helen might attend with support. Helen said that she likes best the fact that she laughs lots on her activities. Case Study B Jack* Summer holidays can feel very long when you have a special needs child. Out of their normal routine the child becomes progressively more grumpy and difficult by the day. Starved of the constant stimulation he craves my son works on more inventive ways to get himself into trouble. Escaping the house and running up the road, drawing on bed-sheets with felt-tip pen, climbing over the banisters. All these happened in the last week because he's bored and he misses school. We, meanwhile, slowly begin to tear our hair out. Then in steps the Hamlet Centre to give us all some relief. It helps him because it provides him with 6 hours of constant stimulation in a safe environment. It helps us because we can have one day a week where we can sit down and have a cup of tea in peace without wondering what he is currently wrecking. And it helps his sister because she has some one-on-one time with us away from her "smelly brother" as she calls him. The Hamlet Centre is a sanity-saver in the school holidays, before we discovered it we were really struggling to cope. We love the way the staff are so friendly and caring, we love the way it is so well organized, we love the fact that we know he is safe on the premises and well cared for which means we can actually relax without having to worry about him all the time. We love the Hamlet Centre - without it we might go a bit mad. 26

27 Case Study C Henry* Henry* is 16 years old. He lives at home with his Mum and Dad and two younger siblings in a rural village which has minimal facilities that are accessible to him. Henry was 14 when he began visiting Marshfields for overnight stays. At this time he had only slept away from home during hospital admissions and had never spent a night away from his parents. Henry has complex needs and requires support from other people to help him reposition himself regularly. He relies on others to manoeuvre his wheelchair for him, and he needs to be supported with his personal care, to administer his meals, fluids and medication through his gastric tube. As he has epilepsy and can have prolonged seizures, he needs to be supervised at all times and has medication during the night. Henry communicates through vocalising and eye pointing and needs people who understand his communication methods. Henry has a strong sense of humour and it is important to him that he is treated in an age-appropriate manner. Henry is very aware of what is going on around him, he understands most things and he is very sensitive to other people s feelings and emotions. Henry s parents identified that they needed support because they were becoming physically tired. They also recognised that Henry needed to be given the opportunity to have new experiences. Marshfields was chosen because it could offer Henry access to specialist equipment, such as slings, hoists and suitable bathing equipment within a homely environment, and because the fully trained staff could meet all his health and social needs. Equally important for Henry and his family was that he could meet friends. Initially Henry came to Marshfields for tea visits and short periods of time to get to know the staff, as well as the other young people. He was initially very anxious and it took him several visits that lasted a few hours with his family, and then by himself, before he was able to consider his first overnight stay. It was important for Henry and his family to gain trust and confidence in the Marshfields staff. If someone supporting him did not seem confident he would become anxious and although he felt secure with his family, he felt scared that he had to trust others to help and understand him and his needs. Over time Henry has established good relationships, not only with staff at Marshfields, but has also bonded with other young people and made friends. He is now confident to stay away from his family for longer periods of time and enjoys activities such as cinema nights, playing on the Wii, listening to music and joining in with football and outdoor games. He feels reassured because staff understand his personal forms of communication, and they take time to listen to him. By eye-pointing at symbols, Henry has told us that he enjoys his visits to Marshfields. His parents have also told us: Marshfields has opened up a new world to Henry. He has mentioned about separating from us and now enjoys time with friends at Marshfields. Due to his physical disabilities Henry is unable to do things other 16 year olds like to do, i.e. hang out with school friends, go to youth clubs etc, but Henry is now able to do this at Marshfields. Henry s confidence has grown so much since going to Marshfields and it s a pleasure to see him able to enjoy something of his own independence from his family. * Fictional names have been used in each case study. Originated

28 APPENDIX 3 PEER REVIEW REPORT 09/12/13 Dear XXXX, I am pleased to enclose your copy of the feedback arising from the PIP Review Team s recent visit to your Short Breaks provision. A further copy has been forwarded to Amy Brooke, Team Manager, Access and Services Team. Also included is an explanation of the Traffic Light scoring system used by the Review Team. The PIP Reviewers would like to thank you and your service users for supporting the project and making them feel welcome at your provision. If you have any questions regarding the feedback, please feel free to contact me. Yours Sincerely Chris Towndrow PIP Project Leader 28