Act Now For Autism: Self-Directed Support Bill (Scotland)

The Self Directed Support Bill:

A Once in a Lifetime Opportunity

The Self-Directed Support Bill is going through its parliamentary stages. Act Now For Autism supports the call by many carer organisations in Scotland asking MSP's to support the amendments being suggested.

The need to recognise and fully support Scotland’s unpaid carers – who provide some £10 billion of care and support each year – has never been greater. As our population changes, it makes economic sense to ensure that unpaid carers – who keep families together, who enable those they support to live the best quality of life possible – have greater rights to recognition and support.

The current proposed provisions will not strengthen support and rights for Scotland’s 650 000 unpaid carers.

This is a once in a lifetime opportunity to give unpaid carers some real rights and recognition.

The amendments being proposed will strengthen the Bill.

Suggested Amendements:

Section 1 - General Principles

The Bill, within its general principles, should fully recognise the key role that carers play in supporting disabled and older people in their own homes and communities.

The principles outlined in guidance for the Community Care and Health (Scotland)

Act 2002 recognise carers as key partners in care. Caring Together: Scotland’s

Carers Strategy 2010 goes further to state that carers should be seen as equal and

expert partners in the provision of care.

There should be a principle laid out in legislation will have greater strength and will ensure that the integral role that carers play is fully recognised and included, where appropriate, in the roll out of self-directed support:

Proposed Amendment:

“Carers should be recognised as key partners in the provision of care, and should

have as much involvement as the person and the carer wishes in relation to:

(a) the assessment of the person’s need for support or services and,

(b) the provision of support or services for this person

In addition, Section 1 (subsection 4) of the Bill could be improved by legislating to ensure that local authorities are instructed to collaborate with any carer when undertaking an assessment and deciding what support to provide to the individual. By making sure this action is taken from the outset, we can ensure that carers are fully involved. This would enable both the individual and their carer to be able to discuss what care the carer is willing and able to provide and what support the individual wants from their carer, if any. This also presents an opportunity to ensure that carers are identified earlier, offered a Carers Assessment and thereafter appropriate support. Moreover, this also ensures that an individual’s choice is not reduced.

This local authority collaboration with carers should also include young carers, including those aged under 16. It is essential and appropriate that the role undertaken by young carers is recognised, and that where appropriate, young carers are involved in discussions and decisions on self-directed support.

Section 2 A duty to support carers

Unpaid carers are a key part of the health and social care system. Not only is it cost-effective to support carers in the roles they do, it makes sense that they themselves have clear rights to support which can prevent them from suffering ill health and from being unable to continue caring.

Section 2 provides a power to authorities to provide support to a carer following an assessment completed under section 12AA (carers assessments relating to carers of those aged 18 or over) of the 1968 Act or section 24 (carers assessments relating to carers of those under the age of 18) of the 1995 Act.

We are concerned that enacting the legislation simply as a power to offer support to carers will result in further, significant variances in practice, and an inequality of service provision across local authority areas. If carers are to be truly recognised as key partners in care, they

require dedicated support that will assist them to continue to care and prevent their

health and wellbeing from suffering, leading to being unable to continue with their

caring role.

By legislating for a statutory duty rather than simply a power, this Bill presents an opportunity to deliver a limited right to some practical support. There is a strong economic case for supporting carers in this way. The Scottish Government has clearly acknowledged the preventative, economic and social benefits of supporting unpaid carers in their role in Caring

Together, Getting it Right for Young Carers and other strategic publications e.g.:

“Carers are equal partners in the planning and delivery of care and support. There is

a strong case on human rights, economic, efficiency and quality of care grounds for

supporting carers. Without the valuable contribution of carers, the health and social

care system would not be sustained”

Providing small interventions and support at the right time can prevent crisis and

subsequent breakdown of care, and can prevent carers from having to give up paid

employment and wellbeing-enhancing activities that sustain their life outside caring.

3. Carers Assessments - The route to carers accessing self-directed support

Section 2 of the Bill sets out how adult carers will be able to access SDS.

As the Bill currently stands, an adult carer’s ability to access SDS is reliant on them

accessing a carer’s assessment under section 12AA of the 1968 Act or Section 24 of

the 1995 Act. This places a duty on local authorities to undertake a carer’s assessment only where the carer is providing “substantial and regular” care. This provides no route to offer preventative support to carers with lower level caring responsibilities, nor does it recognise that the ability for a carer to continue to provide care may also be dependent on additional factors such as their age and health.

By limiting a carer’s assessment to those providing “substantial and regular” care,

many carers are prevented from planning for future requirements such as expected

changes in the cared-for person’s condition, emergencies, or transitions.

Evidence from many local authorities shows that there continues to be poor uptake of Carers’ Assessments across Scotland, with only a small number of carer assessments being carried out. By limiting carers’ access to SDS in this way, we believe that it will undermine the intention of the legislation to provide carers with a means of accessing personalised

support, at a time at which they need it, to enable them to continue in their caring

role.

The draft Care and Support Bill currently at Westminster proposes creating a single

duty for local authorities to undertake carers’ assessments. It will replace existing law

(including the Carers Act 1995) and will remove the requirement that the carer must

be providing a substantial amount of care on a regular basis. This will mean more

carers are able to access an assessment, and that the duty is comparable to that for

the people they support. This is not the case with the proposed legislation in Scotland.

The aim of this assessment will be to consider the impact of caring on the carer and

to determine whether the carer has support needs and what those needs may be. It

must also consider other important issues, such as whether the carer is able or

willing to carry on caring, or whether they want to work.

The ability of carers to access SDS should not be dependent on them being able to evidence that they provide substantial and regular care.

The provision of carers’ assessments should be reviewed, with the aim of providing

carers with easy access to a more outcome-focused assessment process. The Scottish Bill could be altered to help improve this situation by removing the requirement that carers have to show they are providing regular and substantial care. The wording of Section 2 should be changed and the reference to Section 12AA of the 1968 Act removed. The ability of carers to access SDS should not be dependent on them being able to evidence that they provide substantial and regular care.

Without this change, we risk moving behind the rights for carers which will be applied in England. There is an opportunity for Scotland to lead the way.

4. Section 16 Charging

The proposed Bill will give local authorities the power to charge carers for the

services they are assessed as needing. We strongly oppose this. As key partners in care, and the largest contributors of care, it would be wholly unjust to charge carers for the cost of support which helps them to carry out their caring role.

Supporting carers to continue caring, which will help to prevent crisis and avoid costly intervention from statutory services, will be hindered by charging carers for the support they receive. This proposed approach would also lead to further inequality for carers depending on whether their local authority chose to charge for support - there would be no consistency across Scotland.

As carers who access direct payments may potentially only need relatively small amounts of money, to charge carers in this context is wrong and is likely to counteract any benefits gained from offering self-directed support to carers.

Ends

(With thanks to Lynn Williams, policy offer at SCVO, who wrote much of the text for this blog)