Response to Scottish Government Self-directed support strategy - Key Comments

Consultation body

Scottish Government

Response date

May 2010

Focus of consultation

Self-directed support strategy

Alzheimer Scotland welcomes the values and principles set out as underpinning the self-directed support strategy. We see the personalisation of social care services as essential if Scotland is to make best use of scarce resources in an era of increasing demand. We recognise that it is a vision which cannot be delivered immediately, but we hope that our comments below will help to make the final strategy as effective as possible in transforming the organisation of social care and engendering the cultural changes that must happen if this is to succeed.

The points below are the key areas where we believe that the strategy could be strengthened.

Move to self-directed support as default position

Alzheimer Scotland agrees strongly that self-directed support must be made available to everyone. Both Alzheimer Scotland's research and our pilot projects have shown conclusively that, when empowered to direct their own support, families effectively combine state resources around their own natural supports – creating a truly personalised care package. However the current system, limited as it is to direct payments which are often not offered, is failing people with dementia. We believe that as a result of factors including ageism, assumptions about dementia and the entrenched patterns of support they are currently generally restricted to, people with dementia and their families could well continue to be denied the opportunity to benefit from choice and control unless personalisation becomes the system not an add-on or peripheral option. The strategy should explicitly state that self-directed support should become the default option offered. We do agree however, that there should be an opt-out for those who do not wish to arrange their own support, as is likely to be the case for some people with dementia and their families.

Managing a direct payment

We would like the strategy to recommend broadening out the ability to consent to and manage a direct payment to include an appropriate person such as a carer, as in England, as the current requirement to have a power of attorney or guardianship is unduly restrictive for people with dementia and their families. The use of the Access to Funds provision within the Adults with Incapacity Act should be considered, in order to provide a safeguard.

Better information and improved professional awareness

The lack of information, accurate and unbiased, about self-directed support was a recurring theme of the consultation event and of our research. Our study showed that the way direct payments are presented to potential recipients can be shaped by professionals' own views.

I've tried to ask about direct payments but it's blocked – they [social work] completely talked me out of it - Carer

Better signposting and increased general awareness of self-directed support within health, social work and voluntary sector is essential. We see Recommendation 2 as starting to address this but given that newly-trained professionals will enter existing organisational cultures, we do not see it as adequate on its own as providing effective leadership in the short to medium term. We would like to see a recommendation about requirements for training of the existing workforce. There is also no mention in the strategy about promoting self-directed support to groups of people (such as people with dementia) who are not traditionally seen as potential recipients in order to improve the uptake.

It's been 10 years [of caring for husband with dementia] and I'm just finding out about this [SDS] now. - Carer

Eligibility criteria and lack of early intervention

The gap in early, preventive, support for people with dementia, and the impact this lack has in increasing the need for expensive interventions such as long term care are now recognised, and Alzheimer Scotland's Renfrewshire/East Renfrewshire Post-Diagnostic Pilot is seeking to demonstrate how this can be addressed. We welcome Recommendation 1 that the impact of eligibility criteria be reviewed but believe that access to low-level, preventative individual budgets which help people with conditions such as dementia retain their independence and natural supports should form a separate recommendation.

Beyond direct payments - other forms of self-directed support

As our research, Let's get personal, has shown and the consultation event and pilot projects are also highlighting, there are many limitations of direct payments as a mechanism. We support the wider definition of self-directed support in the draft strategy, and would like to see Recommendation 8 strengthened to include the intention that within a defined timescale all local authorities should individualise budgets so that they are able to offer the full range of options to people using self-directed support.

We would like Recommendation 9 to include the expectation that any resource allocation system adopted should be based on co-production, reflecting the values stated in the draft strategy. Currently people with dementia and their carers report feeling uninvolved in assessment and feel little choice or control over what services are offered or received

A shared assessment was done, but it wasn't shared with us. - Carer

We would also like to see the explicit statement that resource allocation systems should be equitable across age and care groups.

There are proportionately fewer resources in social care funding for older people compared to other groups ; there is also a propensity towards personal care, as opposed to social support, and an expectation that older people lead more restricted lives than younger adults.

It's about support that keeps people doing what they've always done, not just the basic of staying alive – and keeps carers having a life too. - Carer

Hourly rates and outcomes

There are many problems with the way that direct payment hourly rates currently operate. Our own research found that there is wide variation between local authorities operating a range of rates, with the lower rate ranging from £6.58 to £12.07 and the higher rates from £11.42 to £22.50. There was also some variation between authorities with a single flat rate, ranging from £10.20 to £11.42.

There is no consistency in the factors used to determine the hourly rate paid, which included client group, type of support and whether a PA or an agency was used. Similarly there was a range of approaches to whether authorities would allow recipients to purchase support from an agency with a higher hourly rate than their set rates, some might pay a higher rate, some would allow the person to purchase fewer hours and some would allow the person to top-up the direct payment level .

These variations are clearly unfair. However, the more fundamental problem, as recognised in the strategy, is that the conceptualisation of the support that people require into hours of support is unhelpful and restrictive.

Although we agree that the analysis in Recommendation 13 would be useful, we also believe that a much stronger statement should be made that the allocation of an individual budget, whether or not it is paid via a direct payment, should not be restricted to the provision of hours of support on a like-for-like basis, and that the rates paid to achieve agreed outcomes should be agreed on an individual basis rather than artificially and inequitably capped. It is also the case that carers' lives are also very much impacted upon. Carer-defined outcomes are very important to making self-directed support work for people with dementia and must be taken into account.

Providers and the social care market

As a provider organisation, we strongly agree with this section and the link made to the forthcoming social care procurement guidance. We would like to see Recommendation 18 made stronger to emphasise intended shift towards individual commissioning.

Brokerage

There is only one mention of brokerage in the strategy, and we feel this is an area needing further attention. Our pilot project has been providing brokerage, and the voluntary sector may be well-placed to offer brokerage, but will need to be resourced to develop and maintain the necessary knowledge and expertise and to provide the service. It is also the case that the role of care managers should shift towards including brokerage.

Employing PAs

We agree with the section on employing personal assistants, but would like a more explicit statement that both PA employers and PAs must not be financially disadvantaged and that the full cost of recruiting, employing, training and maintaining staff including accessing appropriate support services should be covered.

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