Caring for our future - Shared ambitions for care and support (Department of Health)
RNIB and Action for Blind People (December 2011)
Introduction
- We welcome the Law Commission and Dilnot reports as serious and considered attempts to place adult social care on a sustainable footing.
- We urge the Government to reach a decision on the future of care funding because, without this leadership, we fear blind and partially sighted people will continue to experience a system which is unresponsive to their needs.
- The capped costs scheme is the only serious model put forward to date, but the Government must give further thought to the level of the cap so as to prevent unintended consequences.
- We would firmly oppose DLA-style reforms, which look for savings from the Attendance Allowance budget to help plug a shortfall in state funding.
- RNIB Group is delighted with the Law Commission's recommendation on the registers for blind and partially sighted people. Making it a duty on local authorities to keep the registers is crucial.
Contents
Improving quality and the workforce - page 2
Personalisation and choice - page 6
Shaping local care markets - page 11
Prevention - page 15
Integration - page 21
Funding and financial service - page 25
- Improving quality and developing the workforce
1.1 Our main concern about quality centres on the quality of assessments that blind and partially sighted people receive.
1.2 Social care assessments regularly fail to take into account blind and partially sighted people's support needs meaning many people with sight loss are left to go it alone. The risk-based model that underpins access to care services has led to “inadequate and unduly standardised assessments and neglect of some groups...including blind and partially sighted people” (‘Cutting the cake fairly, CSCI review of eligibility criteria for social care’, page 4, 2008).
Assessments
“I feel that the needs of people with visual impairments are not met and more importantly are not understood. There are only two specialist rehabilitation officers covering a large county, social workers are all generic”.
Action for Blind People user participant, 2011
“I would like to suggest that the social workers that carry out the assessments should have more understanding for blindness and the different eye conditions that we have…We are mostly told by our social workers on the first assessments that the budget is tight; therefore this leaves us thinking we are not important. This leaves me and my service users feeling stressed with low self esteem and we do not want to contact social care again. And we continue to struggle with our lives”.
Action for Blind People user participant, 2011
“I don’t think most people have a clue how difficult it is to live in today’s society as a person with sight loss. They should reconsider what qualifies as moderate and critical need…if a blind person drops and breaks a glass, it’s critical. One can’t see the splinters and could easily cut oneself and it’s even worse if you have a guide dog, to keep them away from it”.
Action for Blind People user participant, 2011
1.3 RNIB Group supports a 'needs-led' focus to the proposed assessment duty. We agree with the Law Commission that it is important that the assessment duty is not artificially limited by the availability of services. We do not agree with the Law Commission’s recommendation ruling out a right to have an assessment on request. We feel this would be a useful mechanism.
1.4 We consider that there are certain elements to a good assessment for people with a sight loss and we would therefore support the inclusion of more detail in secondary legislation. Without these elements being in place we do not think social services can provide a quality service.
Recommendation 1: We want to see the legislation clarify that the duty to assess includes those who do not on the face of it qualify for services either because the need for services comes within the 'moderate' or 'low' bands or because their income or capital levels are too high.
Recommendation 2: Secondary legislation should prescribe the timeframe within which an assessment should be completed. Related guidance should set out the key elements to a high quality assessment for people with sight loss.
Levels of need and level of resources available
1.5 Being blind or partially sighted impacts on the ability to undertake a wide range of everyday activities. Completing activities that sighted people take for granted, for example cooking a meal, handling money and reading written information, will often take planning and involve learning new techniques. One third of people registered blind or partially sighted say they experience difficulties in preparing a meal. One in four people registered blind and partially sighted say they experience difficulties with household cleaning.
1.6 Over the past year blind and partially sighted people have experienced particularly harsh cuts to services. Even though the paucity of care has been a problem for many years cuts like those experienced by Norfolk’s sensory support service (see point 1.7 below) and reductions in specialist rehabilitation for visually impaired people have had a huge effect on quality and workforce development.
1.7 Norfolk County Council proposed to close the Sensory Support Unit for people who have lost their sight in late 2010. Following a period of consultation, in early 2011 it decided to shave forty per cent off the service's budget. This is a service that provides rehabilitative support to people adjusting to a life without sight. These cuts are clearly non-trivial. The unit, which costs £1.1million to run, deals with 2,000 assessments a year and has 1,962 people receiving its services. Local people that have benefited from the Sensory Support Unit claim the changes will end up costing more in the longer-term as people have to move into residential care or become more isolated and marginalised.
Rehabilitation
1.8 We are increasingly hearing that specialist rehabilitation services are under threat, another risk to the future development of the workforce and the quality provision of services. In Derby people are visited in their homes on a one-to-one basis and taught how to cope with being blind. However, Derby City Council is planning to cut its rehabilitation support from 74 to 37 hours per week from January 2012.It is an unpopular move, not only posing a threat to the level of support newly diagnosed people receive but the quality of that support too.
"The rehab team offered so much help during the first few months of me losing my sight. I had 60 years of sight, so without the help of the rehab teams I wouldn't have coped or been able to learn how to be blind”. Dr Gwyn Jones, 63, from Spondon, Derbyshire.
"At first I was taught to use a cane and when I got my guide dog, Josie, I was taught how to get around with her. You think it is the end when you lose your sight and you think that you won't be able to get out and about any more and just be stuck at home. But with the help of the rehab team, they change your attitude. If this service is cut, there will be a backlog of people who are not seen quickly, leading to depression and isolation". Mel Austin, 71, from Spondon, Derbyshire
1.9 We are hearing that a number of councils are making access to rehabilitation services subject to eligibility criteria when in fact rehabilitation should precede a community care assessment. Some councils are moving to a traded service model where they “spot purchase” individual units of rehabilitation support from independent or voluntary providers. This presents a real challenge to the viability of providing high-quality rehabilitation delivered by skilled and professional staff.
1.10 We have learnt of at least one voluntary provider that faces doing rehabilitation work for at least ten per cent less money with further savings of about six per cent called for in year two. They have made it clear that if they cannot continue with the contract they will give notice to quit. This is the result of a “framework agreement” which is used to source multiple providers so that the local authority can pick and choose who carries out individual tasks, as well as drive prices down. There is a big threat of fragmented care.
1.11 Resource Allocation Systems (which we also refer to in chapter 2 on personalisation below) can miscalculate the true costs of a blind or partially sighted person’s care needs. This can place providers in a position where they are forced to negotiate with the council on the exact amount of money it costs to provide high-quality care and the number of hours required to help provide this care. Again, quality can suffer as a result.
Recommendation 3: To ensure newly diagnosed blind and partially sighted people receive high quality support local authorities must still secure specialist rehabilitation services for people with visual impairments. Looking to the future the national eligibility system should be flexible enough to ensure people who lose their sight can receive specialist rehabilitation. This support may be time limited but the code of practice should clarify it cannot always be time prescribed (so for example to six weeks).
"For sight-impaired people, we should like to see a clear distinction between 'care' and what is essentially an educational process, helping people to learn the skills they need to cope with diminished sight and to retain their independence. Skills would include mobility, regaining lost literacy (computer training and support could play a major role here), as well as practical daily living skills. This is where the skills of rehab workers are so important, and different from generic social workers. Unfortunately, this distinction is sometimes not appreciated in social services circles, as rehab workers are seldom represented in management grades, and there are alarming reports that in some places rehab workers as such have ceased to be employed, leaving the work to generic social workers".
Chief Officer, local organisation for visually impaired people, 2011
2. Personalisation and choice
"I have not heard anything about personal budgets from the council…but in fairness I have not accessed social services for over ten years and that was a very negative experience. I did try to get a long cane through them a while ago and was told that I would have to wait at least ten months for an assessment so did not pursue it."
Action for Blind People 'user participant', 2011
The purpose of personalised care
2.1Personalisation is increasingly being defined through a very narrow lens: the drive to provide eligible people with personal budgets, preferably in the form of direct payments. In its vision of adult social care (November 2010), the Government said "personalisation" would see individuals but not institutions taking control of their care. RNIB Group welcomes this broader definition of personalisation but we are disappointed it is not always acted on. The service user quoted above has not experienced "personalised" care or support but nor have thousands of other blind and partially sighted people. This is disappointing when the role of personalisation is to redesign existing services to meet the needs of all.
2.2 Blind and partially sighted people are generally assessed as having "low" or "moderate" care needs. Depending on their level of vision loss, someone who loses their sight can be registered blind or partially sighted. This will take place around the time of a community care assessment. Despite this many blind and partially sighted people are considered ineligible for state-funded care, so either self-fund or go without even basic services and levels of support. For example one in five people say they do not recall receiving any visit from social services in the year after they registered as blind or partially sighted (Douglas et al, 2008). Less than a quarter of people who lose their sight say they were offered mobility training to help them get around independently.
Eligibility dilemma
2.3 Ever-tightening access to care services means people with "lower-level" needs rarely see the benefits of the personalisation agenda. This is regrettable, on an individual level but also when we think about the care and support system as a whole. Eligibility thresholds are set so high that blind and partially sighted people often live at risk of becoming more dependent.
"I believe good social care to be fundamental in supporting and even encouraging a thriving quality of life for anyone requiring it, but even more so, I feel that it is essential that the individual in question has the means to decide what they need and don't need, instead of having to face the consequences of a decision made by a stranger".
RNIB campaign supporter, 2011
2.4 A truly effective approach to personalisation would think about the individual (in this case people who are disabled or living with long-term conditions) not the institution (questioning whether or not the individual meets very stringent criteria on access to support). Put another way a person who has just been diagnosed with a condition that leads to deteriorating sight should be able to choose whether they would like to receive emotional support. They may have "low-level" needs under FACS criteria but to tell them they are ineligible for support - and leave it at that, not asking anything else about how they would like to be supported - is in our view contrary to the objectives of personalised care.
Information
2.5 When individuals have eligible care needs choosing what type of care and support they would like to receive can be severely restricted. For personalisation to work blind and partially sighted people need adequate support with accessing information and advice, and occasionally with advocacy and brokerage too. Inaccessible information is a common problem. Seven out of ten blind and partially sighted people report that personal information they were given from their GP is not in an accessible format (Dr Foster Intelligence, 2008). We suspect blind and partially sighted people experience similar problems in relation to accessing written information on care and support.
"The process has not been set up with blind people’s needs in mind. Information is difficult to get a hold of in an accessible format; staff do not respond in a timely manner, the specific needs of blind people have not been taken into account in terms of designing the questions or in various costs that can be offset against contributions."
Action for Blind People user participant, 2011
Recommendation 1: We back the Law Commission's proposal for a statutory duty to be placed on local authorities to provide information, advice and assistance to all residents with care needs. We would like to see this taken forward in the White Paper and Social Care Bill. It is absolutely essential that any such information provided to the public is made available in an accessible format to blind and partially sighted people. Whilst we would accept that the Equality Act already places such a duty on local authorities, our experience is that authorities often do not comply. Placing such a duty within the proposed social care statute would reinforce to social services their obligations in this respect.
Recommendation 2: We back the Dilnot Commission's proposal ondeveloping a major new information and advice strategy to help when care needs arise. It is critical that the public has access to better, easy-to-understand and reliable information and advice about services and funding sources. The strategy should be produced in partnership with charities, local government and the financial services sector. Local authorities should provide information, advice and assistance to all people, irrespective of how their care is funded or provided.
Resource Allocation
2.6 Personalisation and choice are also restricted when Resource Allocation Systems miscalculate the true cost of meeting an individual's needs. In general there are three different models being used by local authorities at the present time but for RNIB's purposes we are increasingly coming across the use of a points-based Resource Allocation System as a means of calculating the cost of a support package. This is especially common in the context of supported living placements but we are coming across its use in residential placements too.
2.7 Whilst RNIB care establishments continue to develop support plans in the normal way the way the RAS operates has made this increasingly difficult with the effect that significant needs of service users go unmet despite these needs being firmly within local authorities’ eligibility criteria. From RNIB's point of view the RAS frequently fails to take account of difficulties in many aspects of daily living experienced by people as a result of their sight loss (and complex needs).We have recently heard about a young man who currently lives at home who was independently assessed as needing a package of care costing approx £120,000. The local authority calculated his needs through a RAS and has arrived at a figure of approximately £80,000. The local authority is sticking with this figure which means that the young man's social needs cannot be met.