The include project campaigns for change for young carers and their families. We promote best practice and work in partnership with social workers, teachers, health care professionals to deliver solutions that consider the needs of the whole family. We want to prevent young carers undertaking inappropriate care which affects there own physical and emotional well-being and give them back their childhood. We deliver bespoke basic awareness raising to professionals and agencies that would like more information regarding young carers and their families. We also produce and disseminate a range of resources and publications to inform and support professionals working directly with families and those commissioning services for them (talk a bit more about the main ones later). We have also worked with local authorities to develop policies and procedures to support whole family working for young carers and have consulted on national guidance and policy to include young carers. All of our work is underpinned by the words of young people and over the last 14 years we have continually consulted with them regarding what they would like from professionals and commissioners to better support them and their families. We do this through a range of specialist residential events, parliamentary visits, Young Carers Forum’s and The National Young Carers Festival – a large national event we run in partnership with YMCA Fairthorne Manor every year – we bring together about 1500 young carers from across the country to have a weekend or fun, respite and to tell us what they would like us to take forward.
This is the only legal definition of a young carer. It also states that: ‘The person receiving care is often a parent but can be a sibling, grandparent or other relative who is disabled, has a chronic illness, mental ill health or other condition connected with a need for care, support or supervision including parental alcohol dependency or drug misuse’ This definition says substantial amount of care on a regular basis’ however it is importance that not only the extent and nature of the caring be taken into account but also the actual and potential impacts these have on the young person.
Whilst most children and young people help out parents to some degree, many will take on caring roles for a family member that are usually associated with an adult and are inappropriate for a child to undertake. It is important to consider the episodic nature of some illness that maybe affecting the cared for person – as a professional it is important to remember that just because a young person is not currently undertaking a caring role that is the circumstances in the family change they may have to take on inappropriate levels of care and crisis plans should be in place to prevent this.
This is a newer definition that was outlined in the: ADASS and ADCS (2009) Working Together to Support Young Carers – A Model Local Memorandum of Understanding between Statutory Directors for Children’s Services and Adult Social Services. The key feature is that the caring responsibility is persistent over time and that that is important to maintaining the health, safety or day to day well-being of the person cared for and/or the wider family. It is important to remember as well that is not speciacally about what the young person is undertaking but how it affects them
Being a young carer can have detrimental effects on young people including problems at school, impacts on there own physical and mental health, isolation, lack of leisure time, the added pressures of keeping a family secrets, problems transitioning to adulthood. Identified young carers is about recognising the manifestation of these impacts on the young person and having an awareness of the family situation of anyone accessing health or social care. The question that also needs to be asked is at what point, in what circumstances and by whom should children and young people be classed as ‘young carers’ It is important to be aware of inappropriate caring roles and the negative impacts on the young person and be able to support the whole family to reduce the caring role and neutralise the negative impacts. Moreover some young people do not identify as young carers, whole some do. It is vital to listen to their point of view and understand the issues and factors that effects their lives. It is important to be aware of that even when all physical and practical care needs of the person who has a long-term illness or disability are being met, children still say that they care emotionally and worry about the person. ‘ “ It’s not just the caring that affects you… What really gets you is the worry of it all.”
Carers (Equal Opportunities) Act 2004 : The practice guidance for this Act translates existing knowledge from research and policy into recommendations for practice, with practice-based examples. It states that, “ There is widespread agreement that children should not be undertaking regular and substantial caring responsibilities or inappropriate personal care tasks ” and that “ Local authorities have a responsibility to ensure that the person needing care has appropriate services and this should include help with parenting tasks ” . It also recommends that there is a multi-agency strategy that addresses the needs of young and a protocol, shared between adults' and children's services, for identifying and assessing young carers. Adopt a whole-family perspective, working jointly with statutory services for children and adults, voluntary services, education and (for children of 13 years and older) Connexions. Thirty-five per cent of young carers are 16-17 years old. This group has needs that differ from those of younger carers, particularly in light of the requirements of the Children Act 2004 to consider training, employment and leisure needs during Assessment. NHS and Community Care Act 1990 – Carers (Recognition and Services Act 1995): Referring the family member who has care needs for an assesssment under Community care act will address the care needs of the indivdual and all young carers are entitled to a Carers Assessment under the 1995 Carers Act when the person they are caring for is being assessed under s.47 If a young carer requests an assessment under the 1995 Act, the local authority must carry out one. As a matter of good practice, however, and in line with Children Act 1989 guidance , the Framework for the Assessment of Children in Need and their Families – see particularly paragraphs 3.61-3.63 – should be used, as it provides for a more holistic assessment under the Children Act 1989. The policy guidance states that “ the new obligation to consider a young carer's wish to work or undertake education, training or leisure would still apply, ” regardless of the legislation under which they were assessed.
Carers Act 2000 This act outlines the entitlement of carers aged over 16 to an assessment from Children’s Services CAF The updated CAF guidance released in 2009 included specific reference to young carers in the practitioners guide is that particular regard is to be given by universal services to young carers who exhibit additional needs which result from their caring role. The managers guidance goes on to say that particular regard may need to be given to joint working between children and adults services when a CAF has been undertaken specifically because of child or young persons caring responsibilities, there may also need to be contact with children with disabilities team in the case of sibling carers. - The CAF for Adults, demonstrator programme running in 12 council-led partnerships: Adults who have parenting responsibilities for a child under 18 years may require help with these responsibilities Children’s Act 1989 If the young persons health or development is impaired or the young person is suffering or may suffer significant harm they should be identified as a child in need and assessed by children’s services using the 1989 Children Act The Framework for the Assessment of Children in Need and their Families Guidance (2000). The main source of guidance continues to be The framework which outlines that an assessment of family circumstances is essential. Section 3.62 states: Young carers should not be expected to carry inappropriate levels of caring which have an adverse impact on their development and life chances. Adults who have parenting responsibilities for a child under 18 years may require help with these responsibilities. In such cases, councils may also have a duty to provide services under section 47 of the Children Act 1989 to safeguard and promote the welfare of children in their area. Where appropriate, the Framework for the Assessment of Children in Need and their Families should be used to explore whether there are any issues relating to children in need and their parenting. Under the Children Act a service may be provided to any member of a child’s family, if it is provided with a view to safeguarding or promoting the child’s welfare.
Ask WHY is the child caring and what needs to change - QUOTE Ascertain what needs to change Providing an assessment only for the child will not necessarily resolve the cause of referral. All assessments should ascertain why the child is caring and what needs to change in order to prevent inappropriate levels of care impacting on the child’s own well-being. Those parents who have difficulties maintaining a positive relationship with their children should have access to appropriate support Assessment should always take in to account the young carer in relation to the parent / cared for person and the whole family – with out understanding the nature of the familiar roles and the taking into account the thoughts and opinions of everyone in the family adequate and appropriate support can not be put in place. Families dealing with illness or disability will have many different and perhaps conflicting emotions. For the parent there may be a reluctance to accept the nature of illness and the associated care needs and to seek help. For the child the fact that they may ‘ not know any different ’ , coupled with feelings of loyalty and love, may conflict with the need to ask for help. All these may compound to prevent many families seeking timely early intervention. Identification of young carers can be problematic. Many children live with family members with stigmatised conditions such as mental illness or drug and alcohol problems. In many cases, families fear what professional intervention may lead to if they are identified. Some families may also have concerns about the stigmatisation of being assessed under children ’ s legislation. ( Carers (Equal Opportunities) Act 2004 ) More info: The Whole Family Pathway signposts professionals to services which will support the whole family where there are unmet care needs. The Key Principles of Practice and Working together to Support Young Carers (ADASS/ADCS) also provide comprehensive outlines of guidance and legislation
Ideal placement of adult health and social care to identify and support young carers Think Local, Act Personal Sets out the new commitment to moving forward with personalisation and community-based support Building on the progress from Putting People First (HM Government 2007) which Outlined the personalised Adult Social Care System that ‘Agreed and shared outcomes which should ensure people, irrespetive of ill or disability, are supported to: Live independently and to sustain a family unit which avoids children being required to take on inappropriate caring roles. Think Local highlights the integral part that support for carers and a whole family approach play to further development: In bringing together health, well-being and social care, councils and their partners will need to: Deliver “whole family” services which look at supporting disabled and older people and their families across health and social care, in an integrated flexible way. This will help ensure that families are not pushed to breaking point where they can no longer provide support. Integrate health and social care commissioning, systems and resources to provide more accessible and joined-up multi disciplinary arrangements New benchmarks for delivering this agenda will be available from April this year. Look at Carers and Personalisation: improving outcomes Offers signposts for better practice and outcomes. Where ever possible, establish whole family approaches that ensire there is intergrated support planning that benefits everyone involved A vision for adult social care: Capable communities and active citizens Overarching principles for adult social care and gives context for future reform Councils should also be mindful, when assessing adults, of young carers to make sure they are not being asked to provide inappropriate levels of care Councils should provide everyone who is eligible for a personal budget, including carers and those they care for, preferably as a direct payment by April 2013 And Direct payments (2002) guidance These can be used to support parents to carry out their parenting role and as such lift a caring responsibility from a young carer, for example having direct payment to support taking children to school – this will prevent the young person supporting younger siblings to school which maybe impacting on there own school attendance. From the age of 16 a carer is also entitled to their own direct payments to help maintain their own health and well-being
Fair Access to Care Service Guidance makes clear that within the context of the Adult Service Eligibility Criteria: All assessments of adults must include a check to find out if there are children in the family who either take or are at risk of taking on a caring role. And to ensure that Adult Services support disabled people in their parenting role. Where the refusal by adult services of assessments or services to a parent who needs care, results or will then result in a child then undertaking inappropriate levels of care, which impact on their own well being, the eligibility threshold should be lowered to ensure services are provided. Coming Soon: The Law Commission – they have proposed simplifying the law on carer assessments, including that surrounding young carers. Tighter links between community care assessment for adults and young carers assessments. White Paper, Equity and Excellence: Liberating the NHS. no decision about me without me . system will focus on personalised care that reflects individuals’ health and care needs, supports carers and encourages strong joint arrangements and local partnerships. GP’s will be taking a leading position in shaping local services The views of carers and families will be central to the reforms in the NHS through JSNA Health and Well-being boards, health watch, online forums and setting local public health responsibilities We will seek to break down barriers between health and social care funding to encourage preventative action. Later this year we will set out our vision for adult social care, to enable people to have greater control over their care and support so they can enjoy maximum independence and responsibility for their own lives. The Department will continue to work closely with the Department for Education on services for children, to ensure that the changes in this White Paper and the subsequent public health White Paper support local health, education and social care services to work together for children and families. Will bring together the conclusions of the Law Commission and the Commission on funding of long-term care, along with our vision, into a White Paper in 2011, with a view to introducing legislation in the second session of this Parliament to establish a sustainable legal and financial framework for adult social care.
Strategic vision and outcomes for carers – the visions and outcomes from the strategy published in 2008 still hold firm (some minor changes) a call for priorities took place to look at focusing action from the strategy. Four Priority areas where recognised through the review were: Identification and recognition: this is focused on early identification and involving carers in the development of services and support – importance of involving carers in delivery of QIPP (Quality, Innovation, Productivity and Prevention workstreams Realising and releasing potential: enabling carers to fulfil their educational and employment potential. Next steps include DfE Early intervention Grants from local government from April 2011 which will bring together multiple funding streams for young people and families including for young carers. A life outside of caring: Personalised support both for carers and those they support, enabling them to have a family and community life. Taking a personalisation approach to caring means that services and support be tayliored to meet specific need including for young carers Supporting carers to stay healthy: mentally and physically – additional funds will be made avaliable to the NHS to support carers to take breaks from caring responsibilities over the next 4 years
Working together to Support young carers – A local model Memorandum of Understanding between Statutory Directors for Children’s Services and Adult Social Services (2009) This offers Adults and Children’s Services a firm base for joint working and working in partnership with health and third sector partners. It aims to provide a framework from which local areas can build and adapted and subsequently implement locally with endorsements at political management level. The model memorandum reflects the spending of time and the invaluable contributions of a whole range of people concerned to make a difference for young carers. Wide adoption and use of the model memorandum would reflect this and help us all to build upon local progress so far. Where a parent of other family member has care or welfare needs arising from physical or mental illness, substance misuse, or disability we will work together and with our partners in health and carers organisations to ensure that: There are no ‘wrong doors’ and that young carers are identified, assessed and their families are supported e nsuring children are protected from excessive or inappropriate caring roles. no care or support package for a parent or sibling relies on a young carer to make it sustainable. Young carers’ well being is promoted and that they have the same access to education, career choices and broader opportunities as their peers Delivering better integrated and more effective responses to young carers as a Council and with partners. Ensuring better recognition and greater participation of young carers and their families in shaping what we do. The key to the above is to think family and to ensure, where services are working with families, that the needs of dependent children in the family, including those who may be assisting with caring, are taken into account.
As a universal service schools may well be the first place in which warning signs of inappropriate caring before they are know to statutory services. Small-scale survey by Ofsted explored how effectively young carers were identified by councils and their partners, they looked at how well councils: were working to identify young carers assessed the needs of young carers and their families consulted young carers when professionals assessed disabled parents addressed young carers’ needs when providing services for disabled parents. Overall, not enough young carers were known about or receiving support in the areas visited. Councils were unable to identify clearly how many young carers were unsupported in their area. A lack of professional awareness and families’ reluctance to engage with services were two key barriers to identifying more young carers. Recommendations: The DfE should: ensure that young carers are given sufficient priority by councils and partners work with councils to find an effective way to obtain realistic estimates of the number of young carers nationally and in each council work with councils to identify and share good practice about the identification of young carers. Councils and partners should: consider ways to ensure that children’s services, adult services and partners work together to deliver holistic assessments and services that meet the needs of the whole family ensure that professionals within universal services are aware of the needs of young carers, so that they can be identified and supported ensure that young carers are aware of their right to request a carer’s assessment when an assessment or reassessment of their parent takes place ensure that children and young people’s views contribute to assessments of disabled parents and family needs ensure that children’s caring roles are always taken into account when services are delivered to disabled parents, to ensure that children and young people are not overly burdened explore whether any groups of children and young people are over- or under-represented within the known young carers group and the reasons for this esource young carers support projects more effectively.
Key Principles of Practice are intended to be used along side all the current legislation and guidance. We hope that u sing the Key Principles of Practice will help to ensure the best use of statutory and voluntary sector resources and promote whole family working. In our work we have adopted a broad and inclusive definition of ‘disabled’ to include anybody with actual or perceived physical, sensory, emotional or learning impairment, long-term illness, HIV, drug or alcohol dependence or a person with a mental health issue. It is recognised that not all parents included inour definition would define themselves as disabled people. The Key Principles are intended to: Support inter-agency joint practice and vital joint working between adults’ services and children’s services. Encourage young carers and families to come forward and self-refer at an early stage. Support disabled parents’ entitlements to assessments and services, including any parenting support needs. Work towards ensuring that children do not take on inappropriate roles and responsibilities Key Principles of Practice includes An easy to read Summary of legislation and guidance And it outlines 6 key principles to delivering or commissioning services for young carers and their familieas. Each principle has performance indicators and outcomes which agencies may find useful when writing own protocols and strategies etc Draw your attention to Key Principle two: The key to change is the development of a whole family approach to needs led assessments to ensure that service provision is child focused and family orientated. Cross agency whole family working should provide opportunity for service providers to be proactive rather than reactive. Effective partnership working interdepartmentally, across agencies and helps to bridge the gap between children’s and adults services. This includes, among other things, the awareness and provision that families may require flexible and effective services to meet changing needs and that the priority for services should be supporting parents to fulfil their parenting role. And that Adults and children’s services work together to support the family to uphold a child’s welfare
The Whole Family Pathway was developed in conjunction with PRTC and Disabled Parents Network. This is a free online tool that provides a ‘no wrong door’ approach to support the whole family. It is for all practiioners working across sectors including adults’ and children’s statutory services, health, education and voluntary services to ensure that however or whoever the family (parent or child) in need of support first makes contact with an agency the same processes or pathway will be followed. The WFP will also help practitioners to achieve the key principles of practice
Look at the outcomes of using the guidance and legisltaiton to the full extent and supporting young carers and their famileis. WHOLE FAMILY WORKING Assessments for parents and other family members, identify and address any needs of children who are caring and the impact on the family. Adults' and children's services work together to support the family and to uphold a child's welfare. Local policies and practice are influenced and work towards preventing children caring inappropriately at levels which impact on their own development. Assessments for parents and other family members, identify and address any needs of children who are caring and the impact on the family. Adults' and children's services work together to support the family and to uphold a child's welfare. Local policies and practice are influenced and work towards preventing children caring inappropriately at levels which impact on their own development.
Making a Cultural Shift Changes in guidance and legislation to support whole family working and joined up approaches to support Embedding this ‘theory’ in universal and specialist services to promote multi-agency working and support. Moving towards better prevention and early intervention so that families are supported before inappropriate caring levels are taken on by a child and it is not ‘hidden’ until the impacts on the child become so significant as to impact negatively on their own physical and mental health, education, leisure and future aspirations.
The Children’s Society Affecting Change for the Whole Family: Young Carers and their families
Young Carers National Guidance and the Importance of Whole Family Working Jenny Hine The Children’s Society Include Project
The Include Project <ul><li>Awareness raising with professionals </li></ul><ul><li>Publications and resources </li></ul><ul><li>Training and Development consultancy </li></ul><ul><li>Consultation and empowerment with young carers and their families </li></ul><ul><li>Parliamentary campaigning </li></ul>
<ul><li>‘ Children and young people (under 18) who provide or intend to provide a substantial amount of care on a regular basis’ </li></ul><ul><li>Carers (Recognition and Services) Act 1995 </li></ul>
What do young carers do? <ul><li>Physical care such as lifting, helping a parent on stairs and physiotherapy </li></ul><ul><li>Practical tasks such as cooking, housework and shopping </li></ul><ul><li>Personal care such as dressing, washing, helping with toileting needs. Giving medication </li></ul><ul><li>Managing the family budget, collecting benefits and prescriptions. </li></ul><ul><li>Looking after or “parenting” younger siblings. </li></ul><ul><li>Giving emotional support </li></ul><ul><li>Interpreting </li></ul>
<ul><li>‘ The term young carer should be taken to include children and young people under 18 who provide regular or ongoing care and emotional support to a family member who is physically or mentally ill, disabled or misuses substances… a young carer becomes vulnerable when the level of care-giving and responsibility to the person in need of care becomes excessive or inappropriate for that child, risking impacting on his or her emotional or physical well being or educational achievement and life chances.‘ </li></ul><ul><li>ADASS and ADCS 2009,Working Together to Support Young Carers </li></ul>
What are the impacts? <ul><li>Feeling different </li></ul><ul><li>Being bullied </li></ul><ul><li>Not enough time for homework </li></ul><ul><li>Behavioural problems / isolation </li></ul><ul><li>Additional stress / depression / self harm / WORRY </li></ul><ul><li>Not able to access school activities (after school) </li></ul><ul><li>Underachievement </li></ul><ul><li>Aspirations and careers could suffer </li></ul><ul><li>ABSENTEEISM </li></ul>
Assessing Need <ul><li>Carers (Equal Opportunities) Act 2004 </li></ul><ul><li>No care package should depend on the inappropriate caring role of a child </li></ul><ul><li>NHS and Community Care Act 1990 </li></ul><ul><li>Can refer the person for care needs </li></ul><ul><li>Carer’s (Recognition and Services) Act 1995 </li></ul><ul><li>Entitled to a carers assessment when the person being care for is assessed under s.47 of Community Care Act ’90 </li></ul>
<ul><li>Carers and Disabled Children Act 2000 </li></ul><ul><li>Carers aged 16 and over are entitled to a Carers Assessment </li></ul><ul><li>Common Assessment Framework </li></ul><ul><li>Specific guidance around young carers </li></ul><ul><li>Children Act 1989 </li></ul><ul><li>The Framework for the Assessment of Children in Need and their Families Guidance (2000). </li></ul>
Assessments <ul><li>Assessing the needs of the young carer and the parent in relation to each other is an important part of assessing the needs of the whole family. </li></ul><ul><li>Assessing the needs of the whole family requires good joint working between all agencies (Adult’s Services, Children’s Services, Education and Health services) </li></ul><ul><li>‘ Children do not care in isolation – they care because someone in their family has unmet care need’ </li></ul>
Adult Health & Social Care <ul><li>Think Local, Act Personal (2011) </li></ul><ul><li>sets out the new commitment to moving forward with personalisation and community-based support </li></ul><ul><li>Carers and Personalisation: Improving outcomes (2010) </li></ul><ul><li>Good Practice guide from the Department of Health </li></ul><ul><li>A vision for adult social care: Capable communities and active citizens (2010) </li></ul><ul><li>‘ Councils should also be mindful, when assessing adults, of young carers to make sure they are not being asked to provide inappropriate levels of care’ </li></ul>
<ul><li>‘ Fair Access to Care Services’ Guidance </li></ul><ul><li>All assessments of adults must include a check to find out if there are children in the family </li></ul><ul><li>The Law Commission: Consultation Paper on Adult Social Care </li></ul><ul><li>Simplifying the law on carers assessments </li></ul><ul><li>White Paper: Equity and Excellence: Liberating the NHS </li></ul><ul><li>No Decision about Me, Without Me </li></ul>
Carers Strategy <ul><li>Recognised, valued and supported: next steps for the Carers Strategy (2010) </li></ul><ul><li>‘ children and young people will be protected from inappropriate caring and have the support they need to learn, develop and thrive, and to enjoy positive childhoods’ </li></ul>
Working together to Support Young Carers <ul><li>Young carers are identified, assessed and their families are supported </li></ul><ul><li>No care or support package for a parent or sibling relies on a young carer </li></ul><ul><li>Delivering better integrated and more effective responses to young carers </li></ul><ul><li>Better recognition and greater participation of young carers and their families </li></ul>
Ofsted: Supporting young carers. <ul><li>Identifying, assessing and meeting the needs of young carers and their families </li></ul><ul><li>Councils and partners should: </li></ul><ul><li>Consider ways to ensure that children’s services, adult services and partners work together to deliver holistic assessments and services that meet the needs of the whole family </li></ul><ul><li>Ensure that children’s caring roles are always taken into account when services are delivered to disabled parents, to ensure that children and young people are not overly burdened </li></ul>
Key Principles of Practice <ul><li>Key Principle Two: </li></ul><ul><li>The key to change is the development of a whole family approach to needs led assessments to ensure that service provision is child focused and family orientated </li></ul><ul><li>“ I would like for all professionals to get together and talk about us as a family, rather than as separate individuals” </li></ul>
Outcomes <ul><li>Assessments for parents and other family members, identify and address any needs of children who are caring and the impact on the family. </li></ul><ul><li>Adults' and children's services work together to support the family and to uphold a child's welfare. </li></ul><ul><li>Local policies and practice are influenced and work towards preventing children caring inappropriately at levels which impact on their own development. </li></ul>