Interim National Care Service Advisory Board: Advice to Scottish Ministers and Council Leaders - Self-Directed Support

Background

15. Local authorities have the duty to offer the four self-directed support options to supported people and carers. These options are:

a. Option 1: the individual manages their own budget and arranges their own support

b. Option 2: the individual directs the local authority, or a provider acting under the person‘s direction, to make payments on their behalf for services or items

c. Option 3: the local authority arranges the support, and the individual has the budget managed by the council

d. Option 4: the individual can choose to manage some support directly and some have other parts managed by the local authority or organisation on their behalf

16. In 2023, recognising the need to work together across the public, third and independent sectors to improve the delivery of self-directed support, the Scottish Government and COSLA published an Improvement Plan for 2023 to 2027.

17. In 2024 the Health, Social Care and Sport Committee of the Scottish Parliament conducted post-legislative scrutiny of the Social Care (Self-directed support) (Scotland) Act 2013. The then Minister for Social Care, Mental Wellbeing and Sport, Maree Todd MSP, wrote to the Committee in December 2024 and again in May 2025 to update the Committee on each of its 27 calls for action. The correspondence can be found through the following links as background information:

Letter from Minister for Social Care, Mental Wellbeing and Sport, 4 December 2024

Letter from Minister for Social Care, Mental Wellbeing and Sport, 16 May 2025

18. Additionally, there is a significant lack of comprehensive, up-to-date data on Self-directed Support in Scotland, with Public Health Scotland data collection having been paused in 2021 due to the poor quality and variation of the data. This means it is difficult to fully understand use, demand and outcomes. This data gap limits evidence-based policy decisions and has been identified as a priority area for improvement. The Scottish Government SDS policy team is working with Social Care Data and Intelligence Programme Board (SCDIPB) to improve the data collected.

19. Against the backdrop of significant financial challenges facing local authorities and integration authorities, interim Board members have received evidence through their networks and membership bases of reductions to social care support packages, and in relation to harm caused. At this stage, the interim Board’s focus is on Option 1 (Direct Payments), as this is where the interim Board considers improvements can be made most readily. For those in receipt of direct payments, who have chosen to employ a personal assistant, budget reductions could mean having to make that personal assistant redundant. This in turn would make the employer liable for all the redundancy costs where the local authority no longer offers financial assistance to cover these costs. This can run into thousands of pounds.

20. Further information on the currently known/reported issues relating to self-directed support is provided at Annex A. In addition, in order to quantify and evidence the issues being brought to the Board, Self-Directed Support Scotland is currently working in partnership with disabled people-led organisations, independent support organisations and independent brokers to conduct further research and analysis of cuts, building on that which has recently been completed by Social Work Scotland.^[2] Glasgow Disability Alliance is also gathering and collating a compilation of lived experience examples which will further illuminate issues and potential themes for consideration.

Flexibility of spend

21. Existing guidance and standards permit broad use of direct payments, but practice varies significantly across local authorities. This variation, combined with wider pressures on social care budgets, risks eroding person-centred principles and completely undermining the choice and control intended by the Social Care (Self-directed support) (Scotland) Act 2013.

22. There is strong evidence to suggest reductions in care packages may be driven or exacerbated by a lack of flexibility regarding how budgets are spent. This is illustrated in the real life examples below, provided by social care charity Community Contacts, Argyll & Bute and Highland's SiRD funded independent support organisation and the Independent Living Fund (ILF) Scotland:

a. A family caring for an active woman in her eighties with dementia initially managed without an SDS budget but later requested one as her needs increased, receiving an Option One budget for 3.5 hours of weekly personal care to enable daily showers.

Seeking flexibility to use the Direct Payment for breaks and community engagement rather than only personal care, they approached Community Contacts for support, but the HSCP restricted the budget to personal care tasks and required a rigid time-and-task record, which failed to reflect the woman’s fluctuating needs and preference for independence.

Unable to secure flexible use of funds, the situation deteriorated, leading to the woman’s hospital admission and eventual move to permanent residential care.

b. A local authority initially allowed SDS budget flexibility to bank hours which the person could use to plan and enjoy short breaks throughout the year. The budget was used to cover care provider support and accommodation, while the person paid for their own expenses.

The local authority then changed its position, requiring funding to be used weekly, or be ‘clawed back.’ The removal of flexibility meant that the person was no longer able to save for short breaks, despite the clear independent living benefits.

The ILF award was reconfigured to enable the person to resume their short breaks, protecting the SDS budget and maintaining important independent living outcomes. The service provider highlighted that these breaks have transformed the person’s life, fostering positive focus and improved wellbeing.

23. In addition, a lack of flexibility can impact on someone’s ability to use their allocated budget to meet needs and achieve personal outcomes. Where someone’s assessment identifies a specific service or support, which the person in receipt of direct payments is then unable to secure, the local authority may ask the individual to return the money. While there can be a number of legitimate reasons for returning unspent money, issues arise where inflexibility prevents the spending of funds, which then accumulate and require to be returned. Two more illustrative examples from the Independent Living Fund:

a. A local authority stopped allowing the funding of fuel costs through self-directed support.

A person living in a very rural area needed to travel 700 miles weekly to access essential activities like swimming, which supports mobility, muscle health and emotional wellbeing. This was not possible without funding support. The lack of flexibility created a financial barrier to accessing services and living independently.

The ILF award now largely covers these exceptional Disability Related Expenditure costs for this person, while maintaining the overall local authority input at the level of threshold required by ILF in these circumstances. Agreed independent living outcomes therefore continue to be met.

b. An NHS Occupational Therapist confirmed the therapeutic benefit to an individual of physiotherapy, but the NHS and local authority will not provide funding as they consider this a “maintenance programme.”

The ILF award now funds the necessary physiotherapy, including Personal Assistant training and support for active and passive massage/exercise. This is essential for the individual to prevent muscle deterioration, pain, and loss of mobility for personal care, hence maintaining and enhancing agreed independent living outcomes. Local authority input is maintained above ILF threshold levels with a focus.

24. The interim Board notes the good practice in South Ayrshire and West Dunbartonshire, which have developed a simpler agreement allowing both regulated and unregulated providers to be used under Option 2. The Board suggests it would be helpful for this approach to be applied to Option 1 – direct payments. Annex A provides further examples of the value of flexible spend.

25. In contrast, the interim Board is concerned to note the worrying direction of travel of some health and social care partnerships, like North Ayrshire, which is currently consulting on the delivery of social care services and asking people to make impossible choices about:

• which rights matter most
• which services are integral to needs
• personal care over non personal care (noting the Board is unclear what is meant by this)
• clarity of eligibility criteria
• how to prioritise eligibility
• changing thresholds to reduce costs
• choice and costs – in particular whether choice should be limited by need to reduce costs
• charging for social care

26. There are other examples of local authorities placing a financial ceiling on the amount of social care support someone can receive; meaning that anyone whose support needs exceed that cap has to go into residential care. These examples, and others like them, fail to recognise that all elements of social care are interconnected and equally important. Indeed, people are being asked to select limited priorities from lists that do not reflect the reality and interconnected nature of people’s lives or human rights – as outlined in various pieces of legislation, including the SDS Act. This consultation and potentially others, appear to be steering responses in the direction of helping to justify cuts, rather than genuinely seeking views in a meaningful, people-led way. The impact of this approach has been described to us as follows by a person who uses social care:

“There is a dangerous direction here – eroding rights and removing protections, social care being cut all over the place, and the UK Government going after disability benefits is leaving disabled people and our families extremely vulnerable. There is a darkness, a sinister undertone here about how much we cost and that these costs must be cut. Instead we should be talking about how much disabled people are worth – and investing in that!”

27. As part of the Self-directed Support Improvement Plan 2023 – 2027, the Scottish Government currently funds In-Control Scotland, Self-Directed Support Scotland and Social Work Scotland to take forward work focusing on flexibility of spend, including to:

a. Continue to support local areas to embed the 13 SDS Standards. Where relevant and appropriate, supporting local authority implementation of SDS Framework of Standards in three priority areas – access to budgets and flexibility of spend (including improving processes and approaches to approving personal budgets); and

b. Develop a relationship-based SDS practice model to improve implementation of SDS and flexibility of spend, ensuring decisions are person-centred rather than process driven. Work is underway by Social Work Scotland to develop the model and local areas will begin testing designed elements in autumn 2026.

c. The maximising of informal support, use of community assets and peer support through the development of community brokerage^[3].

Independent support

28. The interim Board considers the involvement of independent support in an individual's assessment or reassessment for a care support package to be essential. This can include support to understand rights and services available, support to navigate services, peer support, collective support, brokerage, advocacy and independent advocacy. Disabled people-led organisations and centres for inclusive living have a clear role here. Support can ensure that individuals have a voice in decisions about their care - in particular, through supporting people to articulate their needs in an outcomes focused way, which allows for sufficiently flexible ways of achieving them. Support can also strengthen an early intervention/preventative approach by ensuring access to information and an understanding of rights from the outset.

29. The interim Board notes that since 2018, more than £19 million has been invested via the Support in the Right Direction programme, providing independent support, information, brokerage and advice to individuals and carers during the SDS process helping more than 18,000 people and families across Scotland to plan and implement the social care support they need.