Response to proposals for a Self-Directed Support (Scotland) Bill

Introduction

Alzheimer Scotland is Scotland’s leading dementia voluntary organisation. We work to improve the lives of everyone affected by dementia through our campaigning work nationally and locally and through facilitating the involvement of people with dementia and carers in getting their views and experiences heard. We provide specialist and personalised services to people with dementia and their families and carers in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website and our wide range of publications. We welcome the opportunity to comment on the Proposals for a Self-Directed Support (Scotland) Bill.

General comments

Alzheimer Scotland welcomes the values and principles of self-directed support; 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.

Currently very few people with dementia use self-directed support throughout Scotland. It is estimated that only around 300 people with dementia in Scotland use a direct payment . Legislative change and the enshrining of self-directed support in statute are essential in order to create the structures to ensure a greater number of people can benefit from this approach in the future.

Consolidating existing statutes

We agree with the proposal that a new Bill on self-directed support should consolidate and update existing legislation on direct payments.

We believe it to be vital that the new Act should be based on a set of guiding principles. There are good examples where establishing fundamental principles have worked well; for example, Adults with Incapacity Act provides a set of guiding principles for those considering intervention. However, the principles outlined in the consultation paper should be amended so that they also relate to a person with diminishing capacity where someone is acting on his or her behalf.

Setting the framework for self-directed support

We agree with the proposal to introduce the term self-directed support into statute; this should make clear that self-directed support involves a much wider approach to giving service users choice and control, beyond merely offering a direct payment.

There is currently much misunderstanding around the terminology of personalisation; this causes confusion among both professionals and the general public. There is an opportunity for the Act to provide clarity and consistency in the terminology of personalisation.

The Act should also define the range of options through which self-directed support can be delivered. Consistency of language around the ways in which self-directed support can be delivered would help understanding and awareness amongst professionals and the public.

Framework for future developments in self-directed support

We agree that the legal framework should include powers to extend direct payments and other forms of self-directed support; however, we would like to see this happen immediately in the proposed legislation, rather than at some future point.

The needs of people with dementia and their carers do not fit neatly into health board or social care defined parameters; there is a need for greater flexibility and a mechanism to introduce a straightforward process for health monies to be included in direct payments and other forms of self-directed support.

Moving from opt-in to opt-out

Alzheimer Scotland agrees strongly that self-directed support must be made available to everyone. The default position must be broader than direct payments, as these are not suitable for everyone. Limiting the default position to direct payments will not only fail to address the low take-up but also not provide genuine choice for individuals.

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 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 Act should explicitly state that self-directed support should become the default option offered. We believe this is essential to ensure social work resources are structured so as to facilitate individualised funding.

We do agree 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.

People who lack capacity

We agree with the proposal to expand the categories of person who can receive a direct payment on behalf of an adult who lacks capacity to consent when no power of attorney or guardianship exists. The process of seeking guardianship is lengthy and can be considered disproportionate when it is only required to manage a direct payment. There is an opportunity to learn from the experience of the English example of a suitable person introduced by the Health and Social Care Act 2008.

Aligning an appropriate person scheme to Part 3 of the Adults with Incapacity Act 2000 (Access to Funds Scheme) would provide a legitimate mechanism for receiving and managing a direct payment. This would have the added safeguard of ensuring that the appropriate person managed the direct payment in accordance with the principles of the Adults with Incapacity Act under the supervision of the Office of the Public Guardian.

Managing a direct payment also involves making welfare decisions; the Access to Funds Scheme does not currently provide authority to make welfare decisions. Consideration should be given to amending the scheme to include limited welfare powers relevant to and required for managing a direct payment.

Extending eligibility

We agree with the proposal to amend the legislation in order to remove the restriction on providing direct payments and other forms of self-directed support to those with mental health problems. We see no reason why people with mental health problems should be not be offered the same flexibility, choice and control.

Residential care

We support the principle of using a direct payment to purchase residential care; however, careful consideration must first be given to ensuring the legal rights of those who take-up this option. The protection and safeguards afforded by the National Care Contract and the Human Rights Act 1998 must be ensured.

In Scotland independent sector care homes are acting as public authorities in respect of a resident where the place in the care home has been arranged by a local authority under section 12 or 13A of the Social Work (Scotland) Act 1968. This enables legal proceedings to be brought against them for breaches of human rights. However, if an individual or their representative uses a direct payment to privately arrange a care home place we are concerned that they may be inadvertently opting out of the protections outlined above as the independent care home may not be seen to be acting as a public authority. These issues must be clarified in order to ensure that the option to purchase residential care with a direct payment does not lessen the legal rights of any individual.

Consideration must also be given to financial implications for individuals using a direct payment to purchase residential care; they will not have the purchasing power and negotiating advantages of a local authority.

Unpaid Carers

We agree with the principle that carers should be made eligible to receive self-directed support and direct payments in certain circumstances. This would bring Scotland into line with in England, where direct payments can be made to carers to allow them to purchase the services they have been assessed as needing to help them maintain their health and wellbeing.

Lindsay Kinnaird
June 2010