Ref: Scoc Care Act Consultation on Regs and Guidance August 18Th 2014/Pmr/Docs

Ref: scoc care act consultation on regs and guidance august 18th 2014/pmr/docs

August 20th 2014

STANDING COMMISSION ON CARERS: RESPONSE TO THE CONSULTATION ON THE DRAFT REGS AND STATUTORY GUIDANCE FOR THE CARE ACT

Introduction: The Standing Commission on Carers warmly welcomes the opportunity to contribute to the consultation on the Care Act’s draft regulations and statutory guidance. We support both the inclusion of carers as a cross-cutting theme across all parts of the regulations and guidance and the more proactive and personalised approach to assessment and planning for care and support. We also welcome the emphasis on the wider agenda of well-being and prevention in order to prevent the escalation of needs and the recognition of the need for more integrated care and support (for the first time including partnerships with the NHS and Housing).

We have set out a number of comments below:

Chapter 2: General duties and universal services.

We welcome the emphasis on well-being and the statement in section 2.2 that the Act ‘establishes one clear and consistent duty for all people who need care and support and an equivalent duty for carers.’ However, we feel that the eight principles (with special reference to ‘b’ and ‘f’) appear to focus more on the person needing care and support than on the carer.
We also welcome the emphasis on prevention and the earlier identification of need in order to reduce subsequent difficulties. However, although a wide range of community based ‘whole population’ and preventive services are mentioned, we would like to see a stronger cross-referencing to the market shaping duties in Chapter 2 on the general duties of the Local Authority.
Several of our members have noted that although community based services are often funded wholly or partially by Local Authorities, they are not necessarily free. If users and carers are to be encouraged to use generic community services, the potential cost both of entry and of travel should be considered. We envisage that the greater use of personal budgets and direct payments should facilitate greater take-up if the individuals and families concerned are aware that some or all of the costs of participation can be covered. However, if the purpose of greater use of community facilities is a reduced dependency on more formal care and support, we hope that Local Authorities might consider whether any charges should be incurred for use of such services when prevention of need is the key objective.
In terms of prevention, we would welcome a specific reference to the role of the Health and Well-Being Board and preventive services which may be available by that route. We recognise that the shift to a preventive approach will require a significant culture change and we welcome the emphasis upon ‘asset-based approaches’ in terms of informing and supporting people at a much earlier stage in order to identify their own needs and where possible, to find solutions. In this context we would welcome a reference to the huge potential of peer support as a way of spreading information and knowledge through multiple communication routes, including social media and twitter. Given the isolation experienced by many carers, facilitating and encouraging peer networks could have powerful benefits in terms of informed assessments and better use of mainstream community activities and resources.
Reviewing the role of Councils’ Contact Centres: We welcome the draft guidance’s emphasis on good quality information and advice. However, in the context of prevention in particular, we would welcome a reference to the importance of Councils’ Contact Centres. For many carers, these will be the first sources of information and, if working well, of referrals to appropriate sources of information and advice across the sector. However, many carers and users find Contact Centres particularly unsatisfactory, with limited information and poor referrals elsewhere. We see a real imperative for Councils to develop better ways of explaining what social care and support are actually about and how to access the system. In terms of prevention, the Contact Centre may be the crucial link between carers and users and sources of information, advice and engagement which are alternatives to ‘traditional’ care and support services.

Chapter 3: First Contact and Identifying Needs

We are pleased that assessments are seen as a critical investment in their own right; that they must be undertaken if any adult appears to have any level of need for care and support regardless of whether they may after assessment be eligible for LA support. We also welcome the emphasis on flexibility and proportionate assessment in addition to the core statutory obligations. We hope that the importance of training and relevant skills and expertise in the assessor are stressed. We have dealt further with this concern in point 4 on page 3.

We warmly welcome the expectation that within all assessments, the LA must consider all needs, regardless of any support currently provided by a carer. We have been concerned at the use of the ‘carer default’ whereby the contribution of the carer was not properly acknowledged and the support they provided was disregarded in any subsequent care planning. In effect, the person being assessed was not assumed to have a need if the carer was meeting it. This assumption has in turn often causes crises in care, when the carer broke down; was ill or when arrangements had to be made for extra support for any reason. Any assessment of the user (and of course of the carer) must take full account of the carer’s role and acknowledge the needs he or she is endeavouring to meet.

With recent improvements in medicine and life expectancy, many caring roles continue over years and the level of care required is likely to escalate. Therefore, we are pleased that Carers Assessments will be holistic and consider the sustainability of the caring role – including the emotional as well as practical implications and taking into account the cumulative impact of the caring responsibilities in the short and longer term.

We are glad that the impact of being assessed is to be considered and that people can opt for, or equally refuse, self-assessment, that the questions to be asked should be provided in advance of assessments to help carers to prepare, and that, if to be done by phone, staff will be trained to recognize issues around capacity and any additional needs not initially referred to. However, we are aware that assessments are often very stressful and new carers may be unaware of the options available. Even if good quality on-line or printed information is provided, we hope that Local Authorities will be encouraged to offer a named first contact (whether in the Local Authority itself or in a third sector organization) to have an initial conversation about the forthcoming assessment.

With regard to specific issues around assessment,

We welcome the acknowledgement of the need for guidance on fluctuating needs, on integrated & combined assessments, NHS Continuing Healthcare and dispute resolution.

The guidance proposes access to specialist assessors for certain conditions, eg multi-sensory impairments. However, it is also important that all assessors should have some expertise in the condition of the individual needing care and support and (in the case of carers) understand of the emotional and practical challenges that carers may face. With regard to assessors, we note that many carers dislike the term ‘carer’ and indeed may not see themselves as caring rather than as carers. Assessment and formally acknowledging the need for care and support can be very challenging, even if the carer wishes for support. Therefore it is important that all assessors have relevant skills and expertise and are able to ensure that the assessment is meaningful and the outcomes reflect the wishes and views of both carer and the person needing care and support.

Assessment as a process not a single activity: We have referred to the importance of reviews elsewhere in this response and we hope that assessments are seen as part of a process of identifying need; agreeing any necessary support and regularly and appropriately reviewing that support over a period of time. The culture shift to personalisation necessitates a very different approach to assessment (ie assessments are now focusing on outcomes rather than eligibility for particular services) and we would like to see the need for on-going information, advice and if necessary advocacy wherever appropriate.

We welcome the significance of individual’s chosen outcomes in determining whether or not they are eligible for LA support. However, we note considerable confusion amongst some carers as to what an ‘outcome’ is and what is an ‘activity’ which they (or the person they care for) would like to carry out. In some instances an activity will be integral to the outcome, eg recovery after a stroke and re-learning sufficient independence to self-care, make short journeys on foot and manage medicine. Although reablement will address some of these activities as part of a comprehensive plan of rehabilitation, many of the activities such as preparing a meal and clearing up afterwards may not be achieved until after the usual six weeks for a reablement programme.

We note in Annex B (‘what has changed after the initial consultation’) that ‘the list of basic activities’ includes the adult’s ability to getting up and dressed and moving around the house. If outcomes are to be taken seriously as the key factor in an assessment, then we hope that the basic activities could go wider. For example, a basic activity could be that the adult gets up, dressed and moves around the house able to prepare and clear up after a simple meal for which he or she has been able to shop for himself (ie get out of the house). Given national concerns about isolation and loneliness in older people and their impact on health and well-being, we would like clarification that eligibility criteria take account of the need for a person to acquire maximum mobility skills (in and outside the home) as well as skills with basic care at home.

We hope that the care and support planning which may emerge from an assessment will be clear about the short, medium and longer term steps necessary in achieving the desired outcomes. In some cases these outcomes may be ambitious and longer term (eg a young disabled adult being able to leave home and move into a home of their own). In other cases they may be about managing a degenerative condition such as cancer or dementia in the most life affirming way. In others, the key issue may be managing a specific and time-limited challenge such as a carer’s admission to hospital. In all these cases (if we want to promote the desired community inclusion) we also need to ensure that assessment of basic activities feeds into the desired outcome of maximum engagement and participation. In this context, carers will need good information and advice in order to plan (often over time) in order to achieve the best outcomes for themselves and the person they care for.

In 6.87, we have some concerns that eligibility appears to be more about the ability to do specific activities rather than considering the ability to carry out a particular activity safely and reliably, as part of a process in connection with other activities (eg understanding the relatedness of shopping, putting perishable shopping away immediately; preparing it cleanly, cooking and cleaning up afterwards). For example, many people with learning disabilities or mild dementia can carry out these tasks individually but may not be able to sequence them safely without prompting and supervision and thereby putting themselves at risk. In this instance, we think that PIP (Personal Independence Payment) approach is right because it sees individual activities in the wider context of living well, safely and reliably.

Some carers would argue that the key safeguarding issue for a relative with high personal support or supervision needs is help to keep the flat clean and tidy and to help with laundry or cooking as required. Without that domestic help, self-neglect would rapidly materialize because the carer could not manage both the personal care and the general household maintenance. Although many carers of course carry out a wide range of domestic care tasks, they may need additional help if they prefer to carry out the personalized support that the individual needs in order to maintain his or her health and well-being rather than focus on essential cleaning and laundry.

Therefore, we are concerned that doubts have been expressed as to whether Local Authorities should fund ‘domestic services’ such as cleaning, laundry, gardening etc. We note that the French and Belgian care and support systems acknowledge the importance of what they call ‘services familiales’ which are essentially services to carry out basic household tasks (which can include cooking) to enable people to stay safely at home for longer and also to help release carers to work or carry out their own family responsibilities such as childcare. In France and Belgium, these ‘services familiales’ are seen as particularly important for families with multiple caring roles where there may be very little time for both household tasks and care to be carried out in two homes (which may well be at a distance from each other). We also note that many carers say that they would prefer to provide the personal care (often of an intimate nature) if only they could have help with the practicalities of also running the family home.Additionally external assistance with domestic services can ‘model’ and thereby help develop housekeeping and independence skills in the person being supported (eg for a person with a learning disability or when someone is recovering from a stroke or injury).
We are also concerned about the need to prioritise ‘maximum independence and mobility’ in terms of the outcomes focus of the Act. Many carers take their relative out and provide regular escort duty for shopping, hospital or doctors visits, socialisation or other reasons. Many older or vulnerable people cannot go out without support and people recovering from a stroke; with a learning disability or mental health problem may require considerable support in order to maximise or to recover their independence. Many carers similarly spend considerable amounts of time accompanying relatives in order to ensure that they do not miss out on important health or other appointments and also where possible to enjoy some sort of social life, both essential for their health and well-being and those of the carer. In addition, whether a person needing care and support can prepare a meal safely or manage their medication properly becomes irrelevant if they are unable to go out and get the food with which to cook or to visit the doctor or pharmacist. A growing number of carers are providing escort duties of this kind when living at a considerable distance and consider that the issue of assisted mobility is frequently under-estimated in terms of the time and cost involved.

Acknowledging the importance of night-time care needs and related carer activities: Many people needing care and support will require specific assistance at the end of the day, whether this is needed for support with bathing, preparing for bed or medication. We note that sleep deprivation is a major cause of stress for many carers. This can be caused by multiple factors such as wakefulness and wandering; the need for medication or turning in the night and sometimes by inappropriate bedroom space (eg the carer needing to sleep on a sofa). Night-time disturbance should be acknowledged within any eligibility criteria (in this context it might be useful to make reference to the potential of assistive technology in monitoring night-time safety without the physical presence of the carer).

With reference to the above, prompting, reminding and encouragement given in the right way are important to many people with learning disabilities, dementia, autism, mental health problems etc –can we check if our concerns are covered by the phrases:

 “being unable’ to includes where the adult is unable to achieve without assistance” and/or:

 “But doing so is likely to endanger health or safety of adult or others without relevant assistance”? (ie stress, negative to well-being of carer or those around). We note that the impact of these and other difficulties may be more significant to the carer and also have longer term implications for health, social acceptability, employment opportunity etc.

We are pleased to read that the full record of assessment and advice (even if eligible needs are not identified) will be made available. However, we also recognize that there will be disagreements about that information’s significance and accuracy in some cases.