Philippa Russell Standing Commission on Carers Ref: scoc care act carers action day february The Care Act 2014 – What it means for carers!

The Care Act 2014 – A ‘new deal’ for carers!

2lst century carers - ‘ Carers are everybody’s business!’ 6.4 million carers in UK, (600,000 dementia carers). Numbers expected to reach 9 million by % of carers give up work to care – major financial implications for many families, with carers emphasising that the best support for everyone would be quality care for their relative. Changing patterns of care, eg more inter-generational and complex care. More carers are now ‘distance carers’. 66% of carers report health problems ‘related to caring’: 78% of carers have significant depression or anxiety levels. Older carers have a 63% greater risk of dying in a 4 year period than non-carers if they report ‘strain’.

‘The elephant in the room’ – caring and the challenge of demographic change.  Number of people over 65 with care needs projected to grow from 2.5 million in 2010 to 4.1 million in  33% of older people have at least one long-term condition, with numbers of people with three or more conditions likely to double by  8 in 10 carers have felt lonely or sociall isolated because of their caring responsibilities.  ‘New survivors’ – numbers of adults with learning disabilities expected to rise by 32% over the next 15 years.

Young carers – ‘I started caring when I was five years and it has continued all my life ever since.’ 166,363 young carers in England (280,364 young adult carers 18-14) 15,000 children provide 50 hours a week or more of care. High risk of education or health problems. Caring often escalates for young adult carers, with major implications for education, training and employment.

The Care Act – ‘Parity of esteem’ for carers Over-arching principle of ‘well-being’ and policy shift from assessment for ‘services’ to assessment and personalised care planning for ‘outcomes’ and to meet ‘needs’. ‘Parity of esteem’ between carers and users [carers are cross-cutting theme across guidance and regs]. Information and advice will be available whether or not the person is eligible for LA funding and support. Financial advice, right to advocacy and appeal system included for first time. ‘Population level duties’: New duty on local authorities to provide information and advice, prevention services and to develop and shape ‘the market’ for care and support services.

The Care Act - Assessments Focus of assessment on needs and outcomes rather than access to specific ‘services’. A National Assessment and Eligibility Framework: The first entitlement to support for carers in their own right – on an equal basis to the person they care for. Removal of requirement for carer to be providing substantial levels of care – assessment triggered by ‘appearance of need’. New duty on NHS and others (including housing) to cooperate and promote integration

More about assessment and care planning Young carers have greater protection and right to assessment. Parent carers: Children and Families Act also gives parent carers stronger rights to assessment and support. Entitlement to a care and support plan for user/support plan for carer (with new duties on portability). Right to a record of the assessment and information and advice on meeting and preventing needs for people who may not be eligible for funded local authority support. Right to a personal budget as part of care and support plan and a right to request a direct payment for all or part of that personal budget.

Assessment and Eligibility Duty to assess on appearance of need for support A new National Eligibility Framework to give consistency in assessment of ‘eligible needs’ across England. Focus on outcomes the user/carer wishes to achieve in everyday life (principle of well-being applies to both carers and users). Emphasis on personalised care and support (with personal budgets for users and carers high on Government agenda). Combination of assessments if all parties agree (including ‘whole family’ assessments and ‘proportionate’ assessments)

Assessments of Carers - If a carer is assessed as having an ‘eligible need’, the LA must meet it. When assessing a carer, the Local Authority has a duty to consider: Whether the carer is willing and able to provide or continue providing care. The impact that caring is having on the carer’s own well-being. The ‘outcomes’ that the carer wishes to achieve in their own lives. The carer’s own capabilities and any support available from friends, family etc. Whether the carer works or wishes to (and/or) to participate in education, training or recreation.

Carers’ needs which meet the eligibility criteria [Regulation 4] A carer’s needs meet the eligibility criteria if because of caring: ◦ The carer is unable or unwilling to provide some of the necessary care. ◦ The carer is unable to carry some household activities in the carer’s home [‘some’ means ‘two or more’ household activities]. ◦ The carer’s physical and mental health is at risk. ◦ The carer is, or is likely to be, unable to access education, training or employment. ◦ The carer is unable or likely to be unable to access community or recreational activities. ◦ The carer is unable or likely to be unable to fully care for any child or any other person in the household needing care and support or to maintain family relationships.

After Assessment, the Care and Support Plans Local Authorities have duties to provide/commission care and support arrangements for ‘eligible needs’ that have been assessed. The outcome of an assessment is a CARE AND SUPPORT PLAN. A major change: Self funders can now request assessment and the LA’s assistance in accessing support. The LA can charge self-funders for this service. Plans should focus on ‘outcomes’ and the LA should have regard to the views of the user, carer and any other relevant people. Emphasis on active participation by users and carers in assessment and care planning. All plans must include a Personal Budget, but carers and users may opt not to manage that budget themselves.

Moving to personal budgets: 2 nd National Personal Budget Survey (Think Local, Act Personal/LGA, 2013) found that:  Carers [of all ages] reported positive outcomes:  Over 70% [of people] felt that personal budgets ‘worked for them’.  60% reported a better quality of life  69% reported that they relieved the support necessary to get on with their lives and remain feeling well  52% felt that their financial position was better  53% felt that their physical and mental well-being had improved.  78% of carers in first evaluation of Personal Health Budgets Pilots felt that the support planning process worked well for them.

Managing transitions….. Care Act acknowledges the importance of transitions. Young disabled people (and young carers) will have strengthened rights to assessment, care planning and support. Care Act introduces concept of ‘whole family assessment.’ Care Act and Children and Families Act overlap. Parent carers now have similar rights to family carers of adults. They are no longer required to be delivering substantial levels of care or to be seen as carers of ‘children in need’. Introduction of EHCs (Education, Health and Care Plans) should make it easier to plan for adult life. EHC Plans can now extend up to age 25 and overlap with adult social care.

A duty on other public bodies to cooperate (eg NHS, Housing, Education etc) Care Act places duty on public bodies to cooperate with the local authority (eg NHS England). NHS England has published its own Commitment to Carers (delivering these commitments featured in NHS England Business Plan 2015/16). New funding initiatives, eg Better Care Fund and IPC [Independent Personalised Commissioning) to encourage partnership and integration. Care Act recognises housing and employment as key factors in care and support for first time.

A new emphasis on ‘market shaping’ Self directed care and support are key principles within Care Act’s assessment and care planning arrangements. But it is recognised that users and carers need a varied and vibrant ‘care market’ in order to make best use of the new requirements around outcome focused assessment. Local authorities have new ‘market shaping duties’ to ensure that there is sufficient high quality care and support in area. Local authorities have over-arching duties with regard to temporarily if necessary taking over failing residential provision (usually because of market failure) and to work with CQC and other to ensure quality and safety.

A new duty to integrate with the NHS Section 3 of the Act places a duty on local authorities to promote integration with health provision where it would:  Promote the well-being of adults with needs and carers in the area.  Contribute to the prevention of the development of needs in adults/carers or:  Improve the quality of care provided for adults/carers.  The ‘Better Care Fund’ will see the NHS transferring funding to local authorities to encourage more ‘joined up’ care.  Simon Stevens (CEO, NHS England) has launched the IPC (Integrated Personal Commissioning) programme, to encourage integrated personal budgets.

Implications for people in residential care Human Rights Act 1998 finally extended to residential care where the home and/or some of the residents have local authority funding or support. Direct Payments will be available to people in residential care. May be used to – part-fund but hopefully can also be accessed to improve ‘quality of life’ issues. Dilnot proposals for ‘cap’ on cost of residential care: People with learning disabilities unlikely to have resources to pay for care but implications if they own a house or if their parents need residential care. Adult Safeguarding Boards – but no new safeguards or definitions of abuse and neglect.

The Care Act – Advocacy and a new Statutory Appeals System Care Act will introduce first Appeals System for when people dissatisfied with outcomes of assessment. Care Act also introduces a right to independent advocacy when no family member or other person available to offer support. BUT still a number of queries about WHO advocates will be and relationship to family members. Children and Families Act introduces Independent Personal Supporters in every area but no equivalent in Care Act. A National Assessment and Eligibility Framework for the first time, but Local Authorities may limit certain types of services or support in order to manage budget. Budget for social care will be set in 2015/16 Comprehensive Spending Review.

Financial matters – paying for care and the challenges around charging. Charging: Local authorities can charge for services (subject to financial assessment). It is not clear whether local authorities will have some guidance about level of charging permitted. Users/carers can ‘top up’ social care and support. Users and carers cannot top up NHS care and support (which must be free at point of delivery). Charging: Family members can now claim payment for management of a personal budget/DP for a relative living in the same household. Charging: Local authorities and the NHS cannot charge for reablement nor can the NHS charge for services offered via a Personal Health Budget. Charging: When assessed, carers cannot be charged for a service directly to the user in their family. But some debate about the intended beneficiary of some services such as respite care. Local authorities CANNOT impose charges without a financial assessment first.

The Care Act – Transforming Commissioning and ‘Making it real’ for carers Carers Strategy Second National Action Plan published November Recognising challenges for carers in accessing reliable information, advice and brokerage around more creative and personalised options for care and support. Designing and developing (co- producing) a new and more diverse ‘market place’ of provision – with third sector as key partners..

The Care Act 2014 – Opportunities and challenges, with carers in the ascendant – as active partners in a changing landscape for care and support. The Care Act 2014 – f irst legal recognition of ‘parity of esteem’ between users and carers and a recognition of family- friendly care and support. Personalisation and partnership – co-producing new patterns of care and support with carers. A commitment to carers across health and social care. BUT challenge in developing an evidence base to satisfy commissioners on what works for carers!

Delivering the Care Act: – ‘Think carer’ - The Carers Strategy Second Action Plan Key vision that carers ‘will be universally recognised and valued as being fundamental to strong families and stable communities’ and: Carers will be respected as expert care partners, with access to integrated and personalised services. Carers will be able to have a life of their own alongside their caring roles. Carers will be supported so that they are not forced into financial hardship through caring. Carers will be supported to stay mentally and physically well and treated with dignity. Children and young people will be protected from inappropriate caring and have the support they need to learn, develop and thrive and enjoy positive childhoods.