Response Self-directed Support draft Bill

Consultation body

Scottish Parliament

Response date

March 2011

Focus of consultation

Personalisation of social care services

Currently very few people with dementia benefit from self-directed support; only 97 direct payments were made for a person with dementia in 2009/10.

Objectives of the draft Bill

Alzheimer Scotland welcomes the objectives of the draft Bill; we see the personalisation of social care services as essential if Scotland is to make the best use of scarce resources in an era of increasing demand.

However, we do not feel that these objectives have been fully realised by the draft Bill. Whilst we consider it overall to be positive and empowering, there are areas that are ambiguous and the language used does not fully reformulate a shift in the balance between citizen and state. Our concerns are detailed in the relevant section below.

An issue of particular concern is that the term self-directed support has not been defined within the draft Bill.

General principles

We do not consider that the general principles go far enough:

• It is essential that the term should is replaced with the term must in principles 1(2), (3), and (4) so that the legislation has the desired impact on practice.
• The term reasonably practicable in principle 1(2) is unclear as to whom it is reasonably practicable for, the person or the local authority. This must be clarified with examples in guidance.
• The use of the term any assistance that is reasonably required in principle 1(3) is unclear as to whom it is considered reasonable for and will require clarification in guidance. The provision of information, independent advice and advocacy will be central to enabling the individual and their supporters to make an informed choice.
• Principle (4) is ambiguous in what it is setting out to achieve and requires clarification and examples within guidance.
• We suggest adding a principle to ensure that each person is treated equally, regardless of the option they choose for delivery of their support.
• We support the promotion of the rights of the individual in the principles. However, a common sense approach is important in relation to a person with diminishing capacity. The involvement of family/other supports in decision making should be clarified in guidance.

Choice and control

New default position

We acknowledge that the draft Bill has not adopted the proposed opt-out position; rather it provides a range of options, with local authority provision as one of these options. This will be appropriate provided all options are genuinely available and equally resourced. Furthermore, it is vital that they are not expressed as hours of support, but instead, should be a flexible indicative budget.

There must not be a shift in power from the local authority to any contracting agency; a person will need support to ensure they write what they want into a contract and it is not based on the agency’s preference. Approved providers lists are restrictive and not in keeping with this proposed legislation. It is essential that the person should be able to contract with whom they choose, providing they are registered with the Care Commission where appropriate.

Those choosing to direct their own care through a direct payment or individual budget should be treated equitably with people who are receiving services from the local authority – this should be outlined by the draft Bill as a guiding principle. There needs to be true equity built into the system to enable people to have real choice and control over their services whilst achieving the best value for the public purse.

We are concerned that the term self-directed support has not been defined within the draft Bill. It is essential that the concept of self-directed support is defined so that it is clearly understood by all stakeholders and remains a clear point of principle as practice evolves. There is still much misunderstanding around the terminology of personalisation; this causes confusion amongst both professionals and the general public. We consider the enshrining of the term self-directed support in statute as essential in order to create the structures to ensure a greater number of people can benefit from this approach in the future. The draft Bill must not miss the opportunity to provide clarity and consistency in the terminology of personalisation.

Whilst the mechanisms for achieving self-directed support have been set-out, these are likely to change over time with practice developments. Furthermore, these mechanisms do not have any explanation of their meaning.
We are concerned that the option to have a third party to hold funds (brokerage) is absent from the range of options. No person should be excluded from the range of options; a person may have capacity to make an informed choice but not be able to take control of the monies.

Informed choice

Local authority responsibility for promoting the availability of the options for self-directed support under section 3 must be clearly defined in guidance with examples of what is considered reasonable steps. Provision of information is essential; this should be a duty on local authorities and stated at the outset within the list of guiding principles.

Right to review or make an alternative choice

Any decision under section 6, 7 or 8 to refuse a direct payment must be notified to the person in writing, or other appropriate means relevant to their disability, to enable them to seek appropriate grounds for requesting a review by the local authority.

Links to health, housing and beyond

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, 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.

People who need help to direct their support

We agree with the provision to provide a power for local authorities to facilitate an appropriate person arrangement where guardianship or power of attorney is not in place. We also consider the list of safeguards as robust and appropriate.

The trigger point for such powers is likely to be when a person who is supporting an individual makes a request to become an appropriate person, either through receiving independent advice or on the guidance of the social work department. Any refusal by a local authority to accept an applicant as an appropriate person must be made in writing to enable the person to understand the grounds of the decision and request a review on appropriate grounds if they choose.

We see no reason for amendment to 13ZA in light of the changes proposed by the draft Bill.

Self-directed support for 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 England, where direct payments can be made to carers to allow them to purchase services they have been assessed as needing to help them maintain their health and wellbeing.

Carers provide invaluable support to the health and social care system; the examples of where this support may be provided within the explanatory notes all promote the support of carers to enable them to continue with their caring role.

Where a carer is receiving a direct payment in their own right, alongside any direct payment for the cared-for person, the two funds should be amalgamated for reporting purposes to ease administrative requirements for recipients.

Provisions on direct payments

A direct payment should be equivalent to meeting the assessed need of the individual. There should be no restriction on the individual adding their own resources to the direct payment in order to purchase support from a service provider with a higher hourly rate than the direct payment. This restriction had been operated by some local authorities .

Regulation-making powers: when to enable and when to restrict

We support the current situation which allows a local authority to determine whether exceptional circumstances exist which would justify using a direct payment to employ a close relative in a particular case. It is important that this is operated consistently by local authorities and they ensure this option is made known to those who may benefit.

We support the principle of providing greater choice and control by removing the current restrictions preventing direct payments being used to purchase residential care. However, we are concerned that an individual who chooses to use a direct payment to contract directly with a care home to purchase residential care may inadvertently lose the protection afforded by the national care home contract and Section 6 Human Rights Act 1998 as amended by Section 145 of the Health and Social Care Act 2008 (provisions of certain social care functions to be a public function). Any changes to these current restrictions must ensure that the intended benefits are not outweighed by the loss of these fundamental protections.

Additions and improvements

We support the proposed amendments to Section 12 (sub-section 1 and 2) and Section 12A of the Social Work Scotland Act 1968. This reflects the shifting practice from a local authority providing services towards them facilitating support and an enabling/mutual approach to achieve better outcomes for individuals.

Conclusion

Alzheimer Scotland believes that transformational change in necessary. We are in agreement with the thrust of the draft Self-directed support Bill and Self-directed Support Strategy. Our comments are intended to strengthen the draft Bill in order to achieve the fundamental changes that are needed if the social care system is to become fit for the future.

The vast majority of care and support for people with dementia is provided by families and friends. It is essential that public resources are made to work alongside these natural supports early on in the illness so that we can appropriately support the growing number of people with dementia in Scotland.

Henry Simmons
Alzheimer Scotland
March 2011

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