Briefing 3: Ways to improve the impact of personal budgets

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In 2008, Essex County Council (ECC) commissioned ecdp and OPM to follow people over 3 years as they use cash payments for adult social care within Essex. …

In 2008, Essex County Council (ECC) commissioned ecdp and OPM to follow people over 3 years as they use cash payments for adult social care within Essex.
This study provides a unique opportunity to fully understand the experiences of people living with a personal budget over this time - a perspective that is often overlooked.
This is one 5 briefing papers that contain findings from the third and final round of research with service users, frontline practitioners and providers in Essex who are working to facilitate self-directed support across the county.
You can read the full, final report, the 4 other associated briefing papers and 3 videos that provide the lived experience of users over the last 3 years on ecdp's website: www.ecdp.org.uk.

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  • 1. Briefing paper 3: Ways toimprove the impact of PersonalBudgetsFindings from the third round of a three-yearlongitudinal study in EssexJuly 2012OPM252B Gray’s Inn Road,London WC1X 8XGtel: 0845 055 3900fax: 0845 055 1700email: office@opm.co.ukweb: www.opm.co.uk
  • 2. Briefing paper 3: Ways to improve the impact of Personal BudgetsIntroductionOPM and ecdp (formerly Essex Coalition of Disabled People) were commissioned by EssexCounty Council (ECC) in October 2008, at the time of introducing Personal Budgets for adultsocial care, to conduct a three-year, longitudinal study into the system of Personal Budgets.The study aimed to: 1. Capture the impact of self-managed Personal Budgets on the lives of people who use them, including evidence of how and why impact is being achieved over time; 2. Assess the effectiveness of practices and processes being used by ECC and its partners to support the delivery of Personal Budgets, including evidence of how the market is evolving over the study period.This is one of a series of briefing papers containing findings from the third round of researchwith service users, frontline practitioners and providers in Essex. These brief papers havebeen produced to share key findings with audiences involved in personalising social care,including practitioners, managers, commissioners, service providers and policy makers.Other papers in this series include:• Briefing paper 1: Positive impacts of Personal Budgets on service users• Briefing paper 2: Factors that enable Personal Budgets to have a positive impact• Briefing paper 3: Ways to improve the impact of Personal Budgets• Briefing paper 4: Family, friends and Personal Budgets• Briefing paper 5: Impact of Personal Budgets on providersFor copies of any of the above or for a copy of the full report, which contains details of ourfindings, please email Sanah Sheikh at OPM. (ssheikh@opm.co.uk) OPM page 1
  • 3. Briefing paper 3: Ways to improve the impact of Personal BudgetsKey points• There are a number of practical ways in which the positive outcomes associated with Personal Budgets can be improved, including greater clarity about Personal Budgets, improving systems and processes associated with Personal Budgets, greater clarity about the annual review process and supporting the local market.• Service users feel there is a lack of clarity about the terms and conditions attached to Personal Budgets. This uncertainty relates to the types of providers that can be employed and the extent to which service users can exercise flexibility in how they spend their Personal Budgets. This is exacerbated by conflicting messages from different social workers. This suggests that there is a need for clear and updated guidelines to support practitioners and service users both during the support planning process and beyond in understanding what they can or can’t do.• Many service users experience a great deal of stress and anxiety because of delays in a revised budget being approved following a review or a change in circumstances. Some also face an additional burden of care when Personal Budgets are not responsive to changing care needs, and therefore not meeting health needs. This is often exacerbated by difficulties in getting in touch with the council and not having one point of contact.• This suggests that local authorities should carefully consider their communication protocols with service users and also fully maximise the use of third parties undertaking support planning and reviews as this will have a beneficial impact on practitioners in enabling them to focus on other tasks.• A number of service users were very unclear as to whether it was their responsibility or the council’s to initiate reviews. They also tend to have different ideas about the purpose of the review and many are nervous that the current economic climate means that they may not continue to receive the money they need to cover care costs. Service users have also had varying experiences of the review – some are positive and others are negative.• These findings suggest that local authorities should be clear with service users about when a review should be instigated and by whom. It should also be transparent about the purpose of reviews and the possible outcomes that could arise from them. Additionally, practitioners should also ensure that they have had a chance to fully engage with the service users support plan prior to the review process.• Some service users and their relatives have had difficulty finding high quality, specialist provision and at times this had meant that they were forced to employ people that provided substandard care. This suggests that there is a need for more easily accessible information around the quality of the market available to service users. Local authorities should consider innovative online platforms that provide user generated information on provider quality.OverviewIn the current round of research, service users included in the sample had been receivingPersonal Budgets for just over two years. The experiences of these service users highlight anumber of practical suggestions about how the positive impacts of Personal Budgets can beimproved. These can be grouped into the following four areas: OPM page 2
  • 4. Briefing paper 3: Ways to improve the impact of Personal Budgets1. Greater clarity about Personal Budgets2. Improving systems and processes associated with Personal Budgets3. Greater clarity about the annual review process4. Supporting the local marketThese practical suggestions are of particular use to commissioners, managers andpractitioners that are involved in the implementation of the personalisation of social care.1. Greater clarity about Personal BudgetsIn the second round of research service users made the point that the lack of clarity in theterms and conditions attached to the Personal Budget could make receiving a budget aparticularly stressful and uncertain time for the service users. Related to this, in the thirdround of research, a number of those responsible for managing the budget expresseduncertainty and a lack of clarity about how Personal Budgets could be used.For some service users and relatives, uncertainty related to not knowing about the types ofproviders that could be employed to provide services. For example, whilst some serviceusers are employing relatives as PAs or carers, others are not because they are not sure ifthey are allowed to do so. This was an uncertainty for parents of service users with learningdisabilities (LD) and was particularly frustrating when there were issues for finding a suitableand consistent PA or where service users had complex or challenging needs.Other service users were unsure about the range of services that they are able to purchasewith their Personal Budgets. More specifically, they were unclear about whether they wereable to exercise flexibility in how they spent their Personal Budgets from what was specifiedin their original support plan. Some reported having received conflicting information fromdifferent social workers about this. "More guidelines and more flexibility of what you can spend it on, for instance okay, we want respite, we know that but it would be nice if it could be spent on some activities with parents" (Mother of service user with LD) "I would just like to have more information about what I could, or could not spend the money on. That is the only thing." (Husband of older service user)Other service users expressed uncertainty about any surplus which may have built up in theirPersonal Budget accounts due to care needs and costs varying over different months. Someservice users felt they were not allowed to build up a surplus and others had receivedconflicting messages about how a surplus could be used. As these examples indicate,conflicting messages delivered by different social workers is exacerbating some serviceusers’ confusion as to what they can spend their Personal Budgets on.It therefore appears that although service users have now been receiving Personal Budgetsfor approximately two years, many feel that they continue to be unclear about the processesassociated with Personal Budgets. This suggests that there is a need for clear and updatedguidelines – which focus on user outcomes, rather than narrow or prescriptive inputs andoutputs – to support practitioners and service users both during the support planning processand beyond in understanding what they can or can’t do. OPM page 3
  • 5. Briefing paper 3: Ways to improve the impact of Personal Budgets2. Improving systems and processes associated with Personal BudgetsIn this round of the research, many service users reported experiencing a great deal of stressand anxiety which was often associated with delays in a revised budget being approvedfollowing a review or a change in circumstances. This is often exacerbated by having onepoint of contact, or receiving conflicting messages from different members of staff.For some service users the delays associated with systems and processes have been limitedto the set-up phase, after which the Personal Budget operates smoothly. This is particularlythe case for service users who do not experience changing care needs. These service userstend to think that the stress and anxiety is worth it in the long run and advise people ‘just tostick it out. It does get easier.’ On the other hand, there are a number of service users whocontinue to experience stress and anxiety associated with delays after the set-up phase, forexample in trying to schedule reviews.A number of service users and their families are also often left with an additional burden ofcare, when Personal Budgets are not responsive to changing care needs, and therefore notmeeting health needs. Again, this was often because a service user is waiting for a review orcannot get in touch with the council to organise their review. For some service users stress and anxiety was associated with the extra financial burden that arises when the budget stops unexpectedly (for example, if the service user is admitted to hospital for a short period of time), when there are delays in receiving the Personal Budgets, either initially when the budget is set up or following a change of circumstances or a review, or when the budget received does not match what the service user expected through their review. These issues arose across the service user groups interviewed. Those managing the Personal Budgets can be left in a situation where they cannot purchase services they need or may have to cover the cost of care themselves. This is particularly stressful depending on the level of resources available to the service user or relative. These findings indicate that there is a need for local authorities to carefully consider their communication protocols with service users so as to try and reduce the amount of time service users spend trying to get in touch with frontline staff. Additionally, local authorities may wish to review the amount of additional support they currently receive from the VCS and the wider market, to add capacity to their current resource of “front-line” staff. They should also fully maximise the use of third parties undertaking support planning and reviews as this will have a beneficial impact on practitioners in enabling them to focus on other tasks and will also increase the sources of information available for a user. This in turn will reduce the frustration of service users seeking to make contact with those people supporting them to navigate the social care process.3. Greater clarity about the annual review processDuring the third round of research, almost two thirds of service users have had a review oftheir Personal Budgets. Some of the service users who had not had a review felt theyneeded one because of needs changing or because of wanting the Personal Budget to berecalculated following a change in circumstances, for example leaving college or school.Many of the service users who have had a review had initiated this themselves by contactingthe council. OPM page 4
  • 6. Briefing paper 3: Ways to improve the impact of Personal BudgetsA number of service users were very unclear as to whether it was their responsibility or thecouncil’s to initiate reviews and some felt they should not have to do so (even though theyhad).Service users tended to have different ideas about the purpose of the review. Some felt thatthe focus of the review was to check up on how they were spending the money, for others itwas to make sure they were okay and see whether the care was still meeting their needs andfor others it was a mixture of these.Some service user’s perceptions of the review seem to have been influenced by the currenteconomic climate. Many felt nervous about whether they would continue to receive themoney they needed to cover care costs, as they felt there was a lack of money in the systemoverall.In addition, there seems to be a lack of understanding about how Personal Budgets arecalculated, which is exacerbated by different social workers delivering contrasting messages,which heightens the fear and nervousness about the review process before it happens. Oneservice user said: "Well, because of the situation economically in the country, I was concerned before the review that the Personal Budget would be cut, because the increase that we personally had, was quite dramatic."(Wife of PSI service user)Service users had varying experiences of the review when they had them. Some serviceusers really appreciated their review, as it made them feel more comfortable about spendingtheir Personal Budgets and provides reassurance that they are “doing it right”. Othersparticularly appreciated their review when a social worker who had previously done theirassessment or review was involved: "They knew exactly the situation with Daniel and they knew what he was like and they knew how difficult and stressful it could be, so this actual review went better than the first one, in as much as she understood where we were coming from really" (Mother of LD service user) Conversely, for some service users a negative experience of the review was due to not having a consistent person assigned to the case, and a sense that the social worker did not understand their needs which increased the scope for misunderstandings. Other negative experiences of the review were because service users felt their social worker was interrogating and reprimanding them for not spending payments correctly; because of being given conflicting information from what they have been told previously or because they find the process confusing. These findings suggest that local authorities should be clear with service users about when a review should be instigated and by whom. It should also be transparent about the purpose of reviews and the possible outcomes that could arise from them. Additionally, practitioners should be encouraged to view the review process not only as a check-up but also a chance to improve outcomes for service users. Practitioners should also ensure that they have had a chance to fully engage with the service users support plan prior to the review process. There may be scope for local authorities to develop “practice share” sessions on how to conduct effective and efficient Personal Budgets reviews. OPM page 5
  • 7. Briefing paper 3: Ways to improve the impact of Personal Budgets4. Supporting the local marketAs in round two of the research, some service users and their relatives had difficulty findinghigh quality, specialist provision which could be a source of frustration and anxiety for serviceusers and their families. Examples of gaps included: specialist provision for young adults withautism who had left school or college; age appropriate services for PSI service users whowere pushed towards services meant for older people and appropriate respite services forLD service users. In these cases, whilst Personal Budgets were seen positively, the impactof them was limited because service users and their relatives did not feel they could findproviders who were able to deliver the appropriate support or care. They found the processof experimenting with different provision to be very stressful. "There’s no kind of adequate services, you know, he needs to be in a specialist autism place where they can understand his needs" (Mother of service user with LD)Some reported that a lack of availability of adequate providers meant that they felt they hadno alternative but to employ people that provided substandard care.The mother of one service user with learning disabilities had been through several PAs forher son. She felt that the PAs were often students or had their own care responsibilities forchildren or relatives which made them unreliable. She also felt that an issue with employing aPA was in trying to purchase small hours of care, when the budget did not cover travel costsfor the PA which meant that it was not worth the PA’s while to pay for travel for one hour’swork. In some cases, frustration with finding suitable provision was exacerbated by aperceived lack of available support and guidance.These findings suggest that there is appetite for local authorities to play a greater role insupporting new entrants to the market, for example in rural areas where service users arecurrently limited by the lack of providers and in under-developed markets such as support forLD service users. There is also a need for more easily accessible information around thequality of the market available to service users. At present, service users rely on “word ofmouth” or “trail and error.” Local authorities should consider innovative online platforms thatprovide user generated information on provider quality. There also remains a demonstrableneed for support services – such as advocacy organisations – to support individuals tonavigate the social care economy. OPM page 6