Our individual response to the Care and Support Bill
We have jointly signed up to a different consultation response alongside Mind, Rethink Mental Illness, the Royal College of Psychiatrists and Centre for Mental Health. That response focused on people with a mental illness.
This individual response from our foundation covers specific issues around how the Bill may impact on people with dementia and people with learning disability (the Mental Health Foundation includes the Foundation for People with Learning Disabilities) – in other words not only groups who can have high levels of need for social care support, but groups that may have difficulty in communicating their views and wishes. It is essential that the Bill ensures that these groups are in no way disadvantaged or discriminated against in the new care and support system.
We are a co-signatory of the National Dementia Declaration signed by over 40 organisations committed to transforming quality of life for people with dementia and their care. This Declaration is based around seven specific statements:
- I have personal choice and control or influence over decisions about me
- I know that services are designed around me and my needs
- I have support that helps me live my life
- I have the knowledge and know-how to get what I need
- I live in an enabling and supportive environment where I feel valued and understood
- I have a sense of belonging and of being a valued part of family, community and civic life
- I know there is research going on which delivers a better life for me now and hope for the future.
The Prime Minister, in his Challenge on Dementia (2012), has stated that the Care and Support White Paper and the Bill will benefit people with dementia and their carers, giving them more choice and control over their care, better information, and a greater assurance of quality. It will be important to ensure that the provisions of the Bill, and subsequent regulations, back up this commitment and provide a watertight guarantee that all the above statements become a reality for people with dementia.
Comments on Clauses
Clauses 1 and 2 set out requirements for local authorities to ensure adults participate as fully as possible in decisions about their care and providing them with information. Many people with dementia and people with learning disabilities do have the ability to make decisions, though this is often under-rated by staff; but they may also require extra support to communicate those decisions. The Bill should specify a duty to provide that extra support for groups that may experience communication difficulties.
Clause 6 requires local authorities to ensure integrated care across social care, health and other services. This is very welcome as ‘silo’ attitudes and funding streams can significantly hinder the provision of good joined-up care to vulnerable groups. We would like to see a commitment in the Bill or in accompanying regulations that a formal independent audit of integrated support is undertaken on an annual basis to ensure local authorities are genuinely acting on this duty.
Clause 7, placing a duty on local authorities to take steps aimed at preventing, delaying or reducing adults’ needs for care and support, is also very welcome. However it will again be difficult to judge whether local authorities are fulfilling this duty without the commitment to an independent audit. We would like regulations to specify that local authorities be required to demonstrate how their activities have met this duty on an annual basis.
Clauses 9-13 set out the proposed single assessment for adults requiring care and support, and for carers’ need for support. We welcome these, and in particular the removal of the requirement that the carer must be providing “substantial care on a regular basis”. We also welcome the right for carers to be consulted on the assessment of the person they care for.
The regulations governing the eligibility framework will be key. We would argue strongly that the level of eligibility should be set no lower than current FACS ‘moderate’ assessment level. Given many people with moderate needs end up requiring substantial and even urgent care because of a lack of support, that would accord with the Clause 7 requirement for a local authority to prevent, delay or reduce adults’ needs for care and support. Setting the threshold at current ‘substantial’ FACS level of need would undermine much of the good that this Bill could do to meet the social care needs of some of the most vulnerable people in our society, and prevent care needs becoming more serious and more expensive.
Clauses 24 and 25 cover care and support plans and personal budgets. We welcome the requirement that local authorities must include a personal budget with an individual’s care and support plan, and offer people (or, for those who do not have capacity, an authorised person) a direct payment.
It is important that the Bill allows for a carer’s personal budget to be used to provide support to the person for whom they are caring without this affecting the care or eligibility of the person being cared for. By the same token, if a person requiring care uses their budget to help support their carer, the carer’s support and eligibility must not be adversely affected.
Accompanying notes suggest that individuals should have the best information available so they can make “sensible” choices about how they spend their budget. It is however important to ensure, especially with people with dementia and people with learning disabilities, that professionals do not act unduly paternalistically and dictate what “sensible” is. Individuals with mental capacity to make decisions about their care should be allowed to spend the money on services that professionals may consider unwise, so long as they are used to meet the needs specified in the care and support plan, and positive risk-taking should be encouraged.
Our Dementia Choices project found that only relatively few people with dementia at present benefit from a personal budget. The pilot sites experienced limited uptake of self-directed support, and indicated that progress had been difficult for a number of reasons, not least the difficulties involved in trying to implement change at a time when the capacity of local authorities to develop and improve their services is under immense pressure.
“For the people who have got a personal budget, it is working really well and they are living their lives in a way in which they choose. We have low numbers of people choosing self-directed support. However, all these people are satisfied with their support arrangements.”
The project also cited concerns about the low level of awareness and understanding of self-directed support among people living with dementia and their family carers, which is clearly a major factor behind low take-up. The Bill should help overcome this. But it is also clear that local social care workers could benefit from practical information about how self-directed support can work for people living with dementia.
Information materials produced by Dementia Choices go some way to address this need and allow learning to be widely shared. But we know that staff do not always have the skills, nor the knowledge of legislation, to do their duty effectively. For example, through work we have done on best interests decision-making we have found that the principle in the Mental Capacity Act (MCA) that there should always be a presumption of capacity, unless proved otherwise, is not always adhered to. About one quarter of best interests decisions were made on the basis of a capacity assessment relating to history, diagnosis or disability, age, appearance or behaviour, or the fact that someone was making an unwise decision – which is illegal. This seemed to indicate a fairly widespread lack of understanding of the MCA.
The Bill, or its regulations, therefore needs to give local authorities a duty to require that staff involved in the assessment and provision of care and support plans, and personal budgets and their reviews, provide a written record if the person lacked capacity to make decisions about consenting to the assessment and what was included in the plan and personal budget. The record must include the evidence to support the decision made.
Clauses 29 covers adults without capacity to request direct payments. Of course since November 2009 (through Direct Payments Regulations) people who may lack the capacity to consent are already entitled to benefit from direct payments. Third parties chosen as ‘suitable persons’ (often family carers) can now receive direct payments on their behalf. This new cohort includes people with learning disabilities and people with dementia. It is important that this clause does not water down the powers of the 2009 Regulations.
We are currently running a project investigating current practice of offering and administering direct payments for people who lack capacity, including the use of ‘suitable person’ proxies under the new direct payments regulations.
Clause 31 aims to ensure that people can move to another part of the country with no disruption to their care. It does guarantee that people will not suddenly lose all care while they are assessed in the authority they have moved to. This is welcome. But it falls short of guaranteeing that the level of care that is provided by the new authority is the same as that provided by the old. So the care package is not truly “portable” - some people may see a drop in support.
We believe that there should be a guarantee that people receive at least an equivalent level of care for the 12 months following a move to a new authority, before any new assessment decides what level of care (greater or lesser, or the same) they are at that time eligible for.
Clause 35 sees the establishment of Safeguarding Adult Boards. We believe there should be a requirement for every SAB to contain representatives of carers of people with learning disabilities and people with dementia, who form two of the most vulnerable groups of adults at risk of abuse. One of the barriers that our Dementia Choices work found was concern about possible abuse by people managing personal budgets on behalf of people living with dementia who lack mental capacity, or by people from services providing care and support. SABs will need a robust system for addressing this concern.
Clause 41 provides a power for local authorities to assess a young carer’s needs. We would like to see the Bill place a duty on local authorities to identify and offer young carers an assessment rather than just enabling the young carer to apply for one. It is very likely many young carers will be ignorant of their rights otherwise.
In 2010, we and The Princess Royal Trust for Carers published a report calling for more to be done to support the 50,000 young people who care for parents with severe mental health problems in the UK. It found that many lack support, with the group being overlooked in policy-making and service planning, and that young carers’ own physical and mental health is being put at risk.
Clause 49 places a duty on local authorities to hold registers of sight-impaired adults. This is positive, but appears wilfully inconsistent in terms of other groups of people with a disability. In particular, we would argue that the Bill should establish a duty for every local authority to establish a learning disability register and a dementia register. Where these exist, and information is kept up-to-date, they are very valuable local resources. But our Dementia Choices work found that at present data collection in local authorities is such that it is difficult to accurately assess the number of people with dementia in receipt of a personal budget.
Such registers will allow local authorities not only to maintain a good database on individuals in their areas who may require social care, but will also ensure that no-one misses out from an assessment. It will also be useful in local authority Health and Wellbeing Boards’ separate duty to produce Joint Strategic Needs Assessments from next year.
The Department of Health should make a firm commitment to involve carers and families in the drafting of the regulations that will implement aspects of the Bill, and especially those covering eligibility for care and support.