Understanding the Care Act and issues for ILF users Workshop Produced by Kate Whittaker

1. Understanding the Care Act and issues for ILF users Workshop Produced by Kate Whittaker Solicitor, Scott-Moncrieff & Associates Ltd. Trustee, Disability Sheffield Centre for Independent Living

2. Aims: • To increase understanding of the Care Act • To explore specific issues & challenges affecting ILF users in transition to support under the Care Act • To explore how best to use the Care Act to try and secure independent living support • To share what’s happening to ILF users in London and what we can do next to fight for independent living

3. 1. Understanding the Care Act 2-3pm • What is the Care Act • Independent living and the Care Act • The well-being principle • Assessments for individuals and carers • Identifying eligible needs for individuals and carers • Support planning and different options for meeting needs • Direct payments • Dealing with problems 2. FAQ’s 3.10-4pm • Key issues and questions for ILF users 3. What’s happening in London & next steps 4pm-4.30pm

4. What is the Care Act 2014? • A new law to bring all the previous bits of law related to social care together in one place and modernise and update it • For adults (there is different law for children) • Local authority (Social Services) responsibilities (there is different law for health authorities) • Most of it came into force on 1 April 2015 • Some of it won’t start until April 2016 or later, and we haven’t got the full details yet, including: • appeals • new rules about paying for care costs

5. What is the Care Act 2014? • A lot of it is the same as before • Local authorities still have to: ASSESS – DECIDE - PROVIDE • The Care Act is made up of:- • The Care Act itself – a law of Parliament: includes duties like the well-being duty, and duties to assess needs and meet them if they are eligible needs • Different sets of regulations – detailed rules about the duties and powers in the Act – eg regulations about eligibility and about direct payments • Statutory Guidance with more detail about how to apply the Act and regulations

6. United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) Article 19 – the right to independent living Art 19: equal right of all disabled people to live in the community, with choices equal to others, including: • opportunity to choose their place of residence and where and with whom they live on an equal basis with others, not obliged to live in a particular living arrangement; • access to a range of support services to support living and inclusion in the community, and prevent isolation or segregation from the community; • community services and facilities for the general population are available on an equal basis for disabled people and are responsive to their needs.

7. Article 19 UNCRPD • States which are signatories to the Convention must take appropriate and effective measures to facilitate and progressively realise the Convention rights to the maximum of their available resources! • UNCRPD has been ratified by the UK Government, so this requirement of progressive realisation applies as an international legal obligation • Does not apply directly in UK law [unlike UN Convention on Human Rights which has been incorporated into domestic law by the Human Rights Act 1998] • But the UNCRPD has to inform how UK laws such as the Human Rights Act and Equality Act should be applied to disabled people

8. The Care Act and independent living • No right to independent living • Article 19 combines civil and political rights to inclusion with the soci0-economic right to support services so you can exercise those rights • Care Act doesn’t have this rights-based approach: provision of services still understood not as a ‘right’ but as ‘welfare’ entitlement • Missed opportunity to fully implement Article 19 • BUT overall the principles and framework of the Care Act are about promoting independent living • See also the #LBBill: 2nd draft requires the State to ensure that all disabled people can live in their community, with choices equal to others and the support necessary to ensure their full inclusion and participation in the community (Clause 1)

9. What about personalisation and personal budgets? • What is a personal budget? It is about the money that is needed to be able to get the care and support you need • Having a personal budget means you should: - know how much money you have in the budget - be able to spend the money in ways and at times that makes sense to you - know what outcomes are supposed to happen from spending the money on care. • A personal budget can be social services money or can include money for other things such as health (a Personal Health Budget), special educational needs, equipment or other things • A personal budget can be direct payments or it can be looked after by someone else - indirect payments or a notional budget – but you still have to have choice and involvement in how it is spent to meet your outcomes

10. The right to have choice and control about your care This has been around for a long time The law says that assessments and care plans should be person-centred – based on how you want to live your life not how someone else says you should People have been able to get their care as direct payments so they can arrange their own support since 1997 - ILF Or if you have ‘indirect payments’ where the council or another organisation looks after the money you are still supposed to be able to have choice and control over how it works

11. The Care Act 2014 and personal budgets Defines a (social services) personal budget in law for the first time: “A personal budget is a statement which specifies... the cost to the local authority of meeting those of the adult’s needs which it is required or decides to meet... the amount which, on the basis of the financial assessment, the adult must pay towards that cost, and If on that basis the local authority must itself pay towards that cost, the amount which it must pay.’ (Section 26) No mention of choice and control! BUT....

12. The well-being principle New fundamental duty in the Care Act (Section 1(2)): in everything a local authority does under the Act: they must promote the well-being of the individual, including: personal dignity and treating you with respect physical and mental health and emotional well-being protection from abuse and neglect control over day-to-day life including care and support and the way in which it is provided participation in work, education, training or recreation social and economic well-being domestic, family and personal relationships suitability of living accommodation contribution to society

13. Well-being and independent living In applying the well-being principle in a community care context, councils must have regard to specific factors (s1(3)): the importance of beginning with the assumption that the individual is best-placed to judge the their own well-being; (b) the individual’s views, wishes, feelings and beliefs; (c) the importance of preventing or delaying the development of needs or reducing them; (d) not making assumptions based purely on age, appearance, behaviour etc.; (e) the importance of the individual participating as fully as possible in decisions about their support and getting the information and help necessary to do so; (f) balancing the individual’s well-being and that of carers (g) the need to protect people from abuse and neglect; and (h) the need to keep restrictions to only the minimum necessary to achieve the purpose of the involvement

14. Well-being and independent living Although independent living isn’t mentioned in Section 1 of the Care Act (on the well-being principle), the Care Act Statutory Guidance states (para. 1.19): ‘The wellbeing principle is intended to cover the key components of independent living, as expressed in the UN Convention on the Rights of Persons with Disabilities (in particular, Article 19 of the Convention). Supporting people to live as independently as possible, for as long as possible, is a guiding principle of the Care Act.’

15. Assessments

16. Assessments It should be easy to get an assessment (or a re-assessment) – the question is whether it seems like you might be in need of services – not whether you will definitely be eligible They shouldn’t refuse to assess because of whether or not you would have to pay for care It should normally be a face-to-face assessment – not just a self-assessment questionnaire The assessor might not be a qualified social worker but they must have proper training to understand your needs

17. Assessments You can have whoever you want there to support you If you will have difficulty dealing with the assessment on your own and you want help with this, social services must make sure you can get free help from an independent advocate (new in the Care Act) If social services think you may need help from Health or housing or someone else they must make sure this happens and work jointly with them The assessor should speak to carers, family or others who can help give information about your needs (if you agree to this) They should also give you a chance to speak to them separately from your carers or family if you want to, and the same for your carers if they want to, about their own needs

18. Assessments - carers Before the Care Act, carers could request an assessment of their needs as a carer but the local authority only had to do one if the carer was providing a substantial amount of care on a regular basis. Now social services have a duty to do a carers assessment if it appears the carer may have needs for support – whether currently or in the future’ – lower test As with adult needs assessments, financial resources are irrelevant at the assessment stage

19. Assessments In the assessment the council has to: consult with you consult with a carer if appropriate consider how your needs impact on your well-being and the outcomes you want to achieve in day-to-day life (new in the Care Act) consider whether you would benefit from preventative services, information and advice or other things available in the community (new in the Care Act) try and agree with you (and your carer if needed) about what services should be provided to meet needs tell you about the amount of charge you may have to pay for any services that may be provided

20. Assessments How long should it take? Older people: Single Assessment Process to commence within 48 hours of initial contact and conclude within a month Other people: it depends on the circumstances, but the Local Govt Ombudsman (LGO) considered that 3 months for an adaptation assessment was ‘simply unacceptable’ If the needs are urgent, a council has a legal power to provide services on a temporary basis until the completion of the assessment If there are urgent needs and Health and Social Services are arguing about who is responsible for meeting them, then one must be do it in the meantime until the issues are resolved If it appears that you may be at risk of abuse or neglect, the local authority must carry out a safeguarding enquiry and decide with you what action is needed

21. Assessments Ensure all needs are clearly identified in the assessment - otherwise they will not be funded. Include the lesser needs as well as the more important ones because they can add up and need to be looked at as a whole. Make sure carers’ needs are identified and met as well Make sure you emphasise the worst risks that might happen if your needs aren’t met, and how support is a stitch in time – don’t just think about how you are on a good day.

22. Assessments – the record It’s VITAL that everything you discuss in the assessment is recorded – get a copy and check it. Ask for missing details to be added. After the assessment there will be a decision about your eligible needs and what support is to be provided and this needs to be made clear on the record too With personal budgets/direct payments, it is even more important to get a clear record of everything that has been discussed and agreed

23. Getting the right level of support

24. Getting the right level of support • Identifying eligible needs for individuals and carers • Support planning and different options for meeting needs • Direct payments • Dealing with problems

25. Eligibility • The assessment should identify all needs: these are the assessed needs but not all will necessarily lead to support being provided, only those that are eligible. • The Care Act introduces a new single, national eligibility framework for all LAs – previously there were variations between areas • The Care Act says that local authorities should consider meeting non-eligible needs if it will help to prevent them escalating and getting worse. • The assessment and decision about support should look at the whole person and how their needs add up.

26. Eligibility regulations To be eligible for support, you must meet three requirements: • Your needs must be the result of a physical or mental impairment or illness • As a result you must be unable to achieve two or more of the outcomes set out in the eligibility criteria, and • As a consequence there is likely to be a significant impact on your well-being The Care Act Guidance says: ‘Significant impact’ means an important effect on your daily life, independence and well-being

27. Eligibility The outcomes are:- • managing and maintaining nutrition • Maintaining personal hygiene • Managing toilet needs • Being appropriately clothed • Being able to make use of your home safely • Maintaining a habitable home environment • Developing and maintaining family or other personal relationships • Accessing and engaging in work, training, education or volunteering • Using necessary facilities or services in the community including transport and recreation

28. Eligibility • ‘Unable to achieve’ an outcome includes beingable to achieve it but: • only with assistance, or • doing so (without assistance) takes significantly longer than would normally be expected, or • doing so (without assistance) causes significant pain, distress or anxiety, or • doing so (without assistance) endangers or is likely to endanger the health or safety of the adult, or of others. • If you have fluctuating needs, the local authority must look at them over a long enough period to properly consider how the eligibility criteria apply • Having eligible needs is not the whole story, it then depends what the local authority decides about what support it will provide to meet them (and any non-eligible needs it decides to meet as well)

29. Eligibility and help from carers • NB the decision about your eligible needs must be ‘carer-blind’ • This means any help you are getting or could get from carers, whether paid or unpaid, must be ignored when determining whether your needs are eligible • The assessment should record if there is unpaid help that family or other carers are willing to give, and you agree with this • This can be taken into account when the authority decide what support they will provide • But not when deciding what your eligible needs are!

30. Eligibility regulations – Carers’ needs • A carer’s needs are eligible if: • The needs arise as a consequence of providing necessary care for an adult • The effect of the carer’s needs is that any of the following circumstances apply: • their physical or mental health is (or is at risk of) deteriorating • they are unable to achieve one or more outcomes: • carrying out caring responsibilities for a child • providing care to other persons • maintaining a habitable home environment in the carer’s home • managing and maintaining nutrition • developing and maintaining family or other personal relationships • engaging in work, training, education or volunteering • making use of necessary facilities or services in the local community • engaging in recreational activities, and • As a consequence there is likely to be a significant impact on the carer’s well-being

31. Eligibility – Carers’ needs • NB (as with support for individuals), even if eligible needs have been identified, there is then a separate question of what support will be provided (if any – may just be signposting to voluntary sector) • If support is needed for a carer, it may be provided as: • support given to the carer, eg direct payments to get a cleaner • support given to the person being cared for, eg short breaks • Those can have different implications, eg about charging

32. Support planning • This is where you have the opportunity to exercise choice and control – there may be many different ways of meeting a particular need • But remember, it all needs to tie in with the process of the council deciding what you are eligible for • You may have a preferred way of meeting a need, but if the council has a cheaper way that it says can meet the need adequately, it can limit the personal budget it provides to the cost of the cheaper way • It’s important to question and check how they say the need can be met for the money – don’t just accept it if you disagree that it would work. • Think again about the risks that might happen if it’s not met properly – tell them.

33. Care Act Guidance paragraph 10.27 ‘In determining how to meet needs, the local authority may also take into reasonable consideration its own finances and budgetary position and must comply with its related public law duties. This includes the importance of ensuring that the funding available to the local authority is sufficient to meet the needs of the entire local population. The local authority may reasonably consider how to balance that requirement with the duty to meet the eligible needs of an individual in determining how an individual’s needs should be met (but not whether those needs are met). However, the local authority should not set arbitrary upper limits on the costs it is willing to pay to meet needs through certain routes – doing so would not deliver an approach that is person-centred or compatible with public law principles. The authority may take decisions on a case-by-case basis which weigh up the total costs of different potential options for meeting needs, and include the cost as a relevant factor in deciding between suitable alternative options for meeting needs. This does not mean choosing the cheapest option; but the one which delivers the outcomes desired for the best value.’

34. Care and support plan – what it must include: • a note of all your needs identified during assessment • details of which ones are eligible needs • the needs that the authority is going to meet, and how it will do this – may be partly or all by a direct payment • agreed outcomes you want to achieve and how support will be organised to meet them • support which carers and others are willing and able to provide – or make clear if they or you are not willing • for a carer, their desired outcomes about providing care, work, education and recreation and how support will be organised to help meet them – may be by direct payments or other support to the carer or support to you • the personal budget, including details of any financial contributions you will need to pay • details of what can be done to reduce or prevent your needs getting worse • amount and frequency of any direct payments you will get

35. Direct payments Direct payments from a local authority may be paid to:- • an adult (over 16) with needs arising from age, disability or other factors • the parents/carers of a disabled child, to meet the child’s needs • a carer (over 16), to meet their own needs as a carer • an ‘authorised person’, to manage on behalf of an individual who lacks mental capacity to manage DPs themselves; the ‘authorised person’ may be:- • the individual’s financial or welfare deputy or attorney • a family member or other close person.

36. Direct payments • The amount of a direct payment must be sufficient to cover all the associated costs, eg • recruitment costs, payroll services, CRB checks on employees • NI, VAT, pension contributions • stat holiday pay, sick pay, maternity pay • employers’ liability insurance, public liability insurance • start-up costs, training • brokerage/advocacy? • Hourly rate – enough to get (and keep) suitably skilled staff • You can choose not to have DPs, or use a mixture of DPs and direct services • Make sure you get clear information about what is involved in managing a personal budget and what support you can get, both at the start and if there are difficulties

37. Support planning Action: • Your support plan must be in writing and address all the ‘how, who, what and when’ and be clear • Having direct payments makes no difference - the support plan and record of assessment must still cover everything • If your support or services change, check that a re-assessment of needs has been completed- family carers should be consulted over this. • If a re-assessment has not been completed, challenge any cuts as it is unlawful to reduce support or services without this

38. Support planning – what should you get? • Local authorities can’t have ‘blanket policies’ such as: • ‘We don’t provide help with bathing without a doctor’s note’ • ‘We don’t provide help with shopping and cleaning’ • ‘We don’t provide travel help anymore’ • ‘We don’t provide evening/weekend services’ • They can’t impose an upper limit on help, e.g. • ‘If you need 24-hour care then it will have to be funded by Health’ • ‘The weekly personal budget can’t be more than the cost of a care home’

39. Support planning – what should you get? • Local authorities must adjust provision to meet your needs – not the other way round. • Disabled people should be able to choose where they live on an equal basis with other people • Local authorities cannot say: • ‘We don’t have anything suitable, so you will either have to use a service outside our area or you will have to arrange this yourself using a personal budget’ • ‘We have funded you in an out of area care home and you are settled and happy there but now you must come back’ • ‘Although there is an ideal service for you (such as a respite care home) we are not going to fund it because it is out of area’

40. Support planning • If nothing suitable is available locally for you, ask for evidence that your council is taking steps to arrange or commission a new service, such as from a charity or other independent provider • Ask how they will adjust provision to meet your needs. • If your relative lacks capacity to decide where they live ask for a ‘best interests’ meeting. Family carers must be included in this meeting and the planning for what is best.

41. Support planning - Allocation or funding panels The panel should not simply refuse to approve proposals put forward by the social worker who has done a detailed assessment of your needs, because of the cost Action:  • Request a written response from the panel which details how the council will fulfil its duty to meet the assessed need. • If the panel’s decision is unfair, complain (see below)

42. Dealing with problems • If you believe that the Council has acted wrongly, you should ask them clearly in writing to sort things out and explain why • Think about how quickly it needs to be dealt with: if it is urgent, explain why and say clearly when you expect an answer • Under the Care Act there will be a new appeals process about assessments and care decisions • People will be entitled to have help from an independent advocate if they need it • If necessary make a formal complaint. Ask for a copy of the Council complaints procedure and make sure you follow it • A  template complaint letter is available from: www.lukeclements.co.uk/resources/index.html (click on ‘precedent complaint letter’) • If the situation is serious, urgent or you are not getting anywhere with the other options, you can seek legal advice from a community care solicitor • There are deadlines for legal action so if in doubt get advice early

43. Dealing with problems • Get advice and help from people and organisations close to you like: • Your social worker • Your service provider • A local disabled people’s organisation (DPO) or other charity • An advocate • Your local councillor or MP • An independent support planner or ‘broker’ • Other disabled people/families who have been through it – peer support or networks through charities

44. Dealing with problems • Different people can help with different things, such as: • Explaining clearly what is happening about your support and giving you the details in writing • Writing a letter of support for you • Helping you make a complaint • Putting you in touch with other people who have faced similar issues • Putting you in touch with other specialist help such as solicitors • Helping you set up your care arrangements, e.g. using a personal budget

45. Get more information and individual advice National organisations: • Community Legal Service: Website to find a solicitor, categories include community care, education and public law: www.legaladviserfinder.justice.gov.uk/AdviserSearch.do; or see the list of solicitors at the end of this guide by Steve Broach & Kate Whittaker: www.centreforwelfarereform.org/uploads/attachment/270/using-the-law-to-fight-cuts.pdf • Disability Law Service: Provides telephone or email advice on community care law. Free to disabled people and their family carers. www.dls.org.uk Tel: 020 77919800  e-mail: advice@dls.org.uk • National charities, eg Carers UK, Disability Rights UK, Mencap, Scope, National Autistic Society, AgeUK • Local organisations eg your local disabled people’s organisation, Save Independent Living campaign, carers’ organisation, advocacy providers

46. Dealing with problems Resources: • See the ILF FAQs guide, available on these websites: • www.disabilitysheffield.org.uk/fact-information-sheets • www.inclusionlondon.co.uk/ILF • http://ilfaction.net/info-guidance/ • The FAQs guide also includes a list of other useful resources on community care issues generally and on specific aspects eg charging and claiming disability related expenditure (DRE) • Steve Broach/Monckton Chambers powerpoint slides on the Care Act, available from Inclusion London (0207 237 3181) or at www.ilfaction.net • Lots of good resources on Luke Clements’s website: www.lukeclements.co.uk

47. FAQ’s for ILF users When will changes happen to my support and how much warning will I get? Will I get enough notice to allow me to meet my employer’s responsibilities?

48. FAQ’s for ILF users How will the local authority go about assessing and providing me with support once ILF has closed?

49. FAQ’s for ILF users What is the well-being duty in the Care Act and how can it help me argue for my independent living needs to be met?

50. FAQ’s for ILF users Do I have a right to an independent advocate through the assessment process? Or other support to be able to manage the process and be properly involved?