Being the Boss as an organisation has been largely about offering peer support and information to employers of Personal Assistants. Over the last year the Directors of BTB have discussed developing specific service projects around both advocacy and training.
With the worsening living conditions for disabled and elderly people we believe there’s an increasing need for independent advocates capable of supporting people through benefit claims and appeals, alongside care package reviews, etc. Our aim is to develop peer group advocacy through training and practice however this would require funding and that is our priority at the moment.
The nature and function of advocacy is often misunderstood or muddled with other forms of support, so below is a simple guide.
There are many different types of advocacy, including:
•self-advocacy
•group advocacy
•peer advocacy
•citizen advocacy
•professional advocacy
•non-instructed advocacy.
Self-advocacy
“I have seen in my many years working in self-advocacy that when people with learning difficulties move into self-advocacy they can move away from the family because they start to have more of a voice.”
Co-production workshop participant
Self-advocacy refers to an individual’s ability to effectively communicate his or her own interests, desires, needs and rights. It recognises that people are experts by experience and involves them in speaking out for themselves about the things that are important to them. It means that people are able to ask for what they want and need and to tell others about their thoughts and feelings.
The goal of self-advocacy is for people to decide what they want and to carry out plans to help them get it. Self-advocacy differs from other forms of advocacy in that the individual self-assesses a situation or problem and then speaks for his or her own needs. The ultimate aim of all forms of advocacy should be to support people to self-advocate as far as they are able to.
Group advocacy
Group advocacy involves people with shared experiences, positions or values coming together in groups to talk and listen to each other and speak up collectively about issues that are important to them. These groups aim to influence public opinion, policy and service provision. They vary considerably in size, influence and motive.
Representatives of local groups are often included on planning committees and involved in the commissioning and monitoring of health and social care services.
Peer advocacy
Peer advocacy refers to one-to-one support provided by advocates with broadly similar impairment related needs or experience to a person using services. Trained and supported volunteers often provide peer advocacy as part of a coordinated project. Peer advocacy schemes argue that they are particularly well placed to empathise with the needs of people, to approach them as their equals and to feel strongly about, and fight hard for, their needs.
Citizen advocacy
Citizen advocacy aims to involve people in their local community by enabling them to have a voice and to make decisions about the things that affect their lives. Citizen advocacy partnerships are long term, not time-limited, and last for as long as the citizen advocate and the individual want them to. Citizen advocates are ordinary members of the local community. They are unpaid and usually operate with support from a coordinated scheme.
Professional advocacy
Paid independent advocates support and enable people to speak up and represent their views, usually during times of major change or crisis. Such advocacy is issue-based and the advocate may only need to work with the person for a short time.
Non-instructed advocacy
There are four recognised approaches to non-instructed advocacy and providers should endeavour to integrate them all when providing support:
•rights-based approach – we all have certain fundamental human rights that can be defined and measured
•person-centred approach – based on the development of long-term, trusting and mutually respectful relationships between advocates and people
•watching brief approach – placing the person at the centre of thinking about the best way to support them
•witness/observer approach – in which the advocate observes or witnesses the way in which a person leads his or her life.
It is important to remember that an individual’s capacity to be involved in decision-making or to instruct an advocate may fluctuate. This provides a further argument in favour of a whole-systems approach to advocacy, which maximises the chances of continuity of support.
Meet the team.
Challenging reductions in care services
Councils must meet the eligible social care needs of disabled and older people as well as those of carers. The duty to meet eligible needs is one that exists regardless of the resource problems a local authority may have.
Although local authorities should review care packages at least once a year, the Statutory Guidance stresses that the ‘review must not be used as a mechanism to arbitrarily reduce the level of a person’s personal budget’.[1]
If, as a result of a reassessment, the support package is reduced or changed in a significant way, then the law requires that the council provides a detailed and convincing explanation as to why this is happening (for example because the person’s condition has improved substantially).[2]
This will include reasoning that gives ‘appropriate weight to obviously relevant material and [does not rely] excessively on the non-expert view of a social worker in a face of a wealth of evidence to the contrary from appropriately qualified and experienced experts’ [3]
The fact that a local authority has financial problems or is using a Resource Allocation System[4] (‘RAS’) is not a lawful reason. Eligible needs must be met and the support cannot be cut unless there is convincing evidence as to why the previous support is no longer required. Local authorities cannot adopt rigid policies or ceilings on care – for example ‘we only provide a maximum of four weeks respite care a year’.[5]
Because local authorities must meet the eligible needs of disabled and older people (and carers) it is unlawful for authorities to impose arbitrary limits on what they are prepared to pay for care packages. Eligible needs must be met regardless of cost: as the Statutory Guidance to the English Care Act explains, a local authority’s finances are relevant when it decides how to meet the eligible needs of an individual ‘but not whether those needs are met’ (para 10.27). The Statutory Guidance goes on to stress that authorities ‘should not set arbitrary upper limits on the costs [they are] willing to pay to meet needs through certain routes’. Although the guidance in Wales is less explicit – the legal position is, in this respect, the same as in England.
The following two cases illustrate the approach taken by the Ombudsman to cuts in care and support packages. Although these decisions were taken prior to the introduction of the Care Act, the law in this respect has not changed.
- A 2013 complaint against Thurrock Council concerned a need of 10½ hours support for a disabled parent which was reduced by a ‘resource panel’ to 6 hours ‘based on ‘other cases’. The Ombudsman found this to be maladministration as there was no evidence / no cogent reasons given for the reduction.
- In a 2012 complaint against Lambeth Council, the Ombudsman held that where a council is providing care services (such as respite care), then the presumption is that it should continue to provide this level of care, until such time as it undertakes a new assessment and provides a revised care plan indicating that different care support is required. In the absence of such action any reduction in support by the council may constitute maladministration.
Authorities must not assume a carer is willing or able to provide any care – including additional care arising from a reduction in the care package. It will be maladministration for such a reduction to occur without assessing the carer and explicitly clarifying (and recording) whether she/he is ‘able and willing’ to provide the additional care.[6]
A 2016 ombudsman report[7] concerned an adult with significant leaning difficulties who lived with his parents. His care package had for many years included 50 days of replacement care to enable his parents to have a break. On review this was reduced to 14 days although his needs had not changed and the sustainability of his parents in maintaining their support was recorded as at risk. In finding maladministration the ombudsman held that the council had to provide an explanation as to the reasons for the reduction: that it ‘needs to show what circumstances have changed to warrant this reduction in respite provision’. In the ombudsman’s opinion it was not acceptable for the council to state that it would offer emergency respite if the need arose:
The parent’s need for ‘weekends away and a little social life are not emergencies but part of a planned sustainable support regime’. The Council’s assessment does not address these sustainability issues and the guidance says the impact on the carers’ daily lives and non caring activities must be included.
On occasions a local authority may suggest that although a person’s eligible needs have not changed, the funding can be cut as the need can be met by a less expensive method. The explanation may be that a different care agency is available that can provide the necessary care at a lower cost. Where this argument is raised, various things should be understood, including:
- The cheaper arrangements must actually exist, as opposed to being a hypothetical alternative.[8] It is not acceptable for the authority to reduce support on the basis of a supposed care package (that does not at present exist) – especially if it is conjectural as to whether this package will actually meet the need and will actually prove to be cheaper. The local authority is required to point to an existing functioning arrangement and be able to demonstrate that this new arrangement will meet the assessed needs (see below) and also demonstrate that it will be significantly cheaper.
- The alternative support arrangement must meet the person’s eligible needs. Care plans need to be detailed statements[9] spelling out how the eligible needs will be met by the provision of the necessary support – including the fine detail – the “how, who, what and when”.[10] By way of example, not infrequently a key component of a care and support plan is to maintain continuity and to ensure that the paid carers have specific training and / or skills. Where continuity is crucial – for example because the disabled person becomes distressed by changed routines or has had bad experiences of previous changes – then this could be a significant factor weighing heavily against any change.[11]
- The Care Act in England and the Social Services and Well-being (Wales) Act 2014 in Wales require local authorities to promote the wellbeing of adults in need and carers and to do this in a way that satisfies certain underpinning principles.[12]
These include the assumption that the individual is best placed to judge their well-being and the duty to promote their control over their day-to-day life, including over the care and support they receive. This means, that the care planning process is ‘central to the provision of person-centred care and support that provides people with choice and control over how to meet their needs’.[13] Para 1.19 of the Statutory Guidance to the Care Act states that ‘independent living’ (within the meaning of Article 19 of the UN Convention on the Rights of People with Disabilities) ‘is a guiding principle of the Care Act’.[14] Article 19 stresses not only the right of disabled people to ‘full inclusion and participation in the community’ but also their right to choose where they live and with whom they live’ (and that they are not obliged to live in a particular living arrangement) as well as their right to a range of social care services ‘necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community’.
On occasions a local authority may state that an eligible need should be funded from the person’s benefits (for example from their Disability Living Allowance (DLA)). This too is unlawful as illustrated by a 2017 ombudsman’s case. This concerned a reduction to direct payments support package, not because the person’s needs had changed, but because the local authority considered that some of her eligible needs (relating to the ‘nutrition’ and ‘maintaining a habitable home’ outcomes) should be paid from her DLA. This was held to be maladministration: there is ‘nothing in the Care Act 2014 or the statutory guidance which allows the Council to require a person to use their benefits this way’.[15] In this respect see also a note in this series concerning cuts to local authority transport services where a similar argument is used – to access this click here.