Factsheet: Programme for Government 2020-2021 – Social Care Support
Date: September 2020
This factsheet covers what the Scottish Government’s 2020-2021 Programme for Government sets out to do on Social Care Support and how this relates to disabled people.
Inclusion Scotland is a ‘Disabled People’s Organisation’ (DPO) – led by disabled people ourselves. Inclusion Scotland works to achieve positive changes to policy and practice, so that we disabled people are fully included throughout all Scottish society as equal citizens.
On 28th August 2020, a coalition of DPOs and carer organisations wrote to the Cabinet Secretary for Health and Social Care calling for radical action to build a Social Care Support system worthy of the name and to re-open the Independent Living Fund Scotland (ILFS) to new and wider applications.
Many people need social care support, not just to stay alive but to have a life, to exercise choice and control, participate and contribute as equal citizens, and achieve even their most basic human rights.
The Independent Living Fund Scotland has the potential to plug the gaps exposed by the current, broken social care support system and reopening to new applicants would have been fairly simple to do before the Parliamentary election in May.
Instead, announced in the new Programme for Government, the Scottish Government have opted for another independent review of adult social care, which will report by January 2021. This will include consideration of a National Care Service.
Facts and figures
The current system
- In Scotland, 67,985 people received home care between January-March 2018. Support people might need can vary from very low need to high support needs. This does not always mean that all need is met in the current system, and many are not eligible for social care support at all, even if they need it.
- Due to over ten years of austerity and a reliance on rationing of social care support to those with ever higher levels of need, there is significant unmet need for social care support in Scotland that has gone unrecorded, so we don’t actually know how many need social care support, or how many are not getting all their support needs met.
- People’s fundamental human rights, equal citizenship and independent living should never be contingent on whether they’re considered a ‘local priority’ or not.
- There has been no consistency of the way Self Directed Support has been implemented across Scotland, even though it has had 6 years to bed in, and even local services are not set up to respond to local conditions, often resulting in short 15 minute ‘time and task’ visits to provide minimal personal care support.
- Due to ever tightening eligibility critieria, and the fact that what people can do with support and how much they’re charged for it can vary from authority to authority, huge problems can arise for people relocating from one area of Scotland to another (i.e. portability of social care support packages).
- This impacts on people’s human rights to private and family life, and rights to work, since there is no guarantee of getting needs met if you need to move to a different part of Scotland.
Unfair Care Tax
- To receive the support needed to achieve their human rights, equal and independent living people are charged for it by their local authorities. We consider this to be an unfair tax that should be stopped.
- According to a Freedom of Information request from the Scotland Against the Care Tax campaign to local councils when free personal care was introduced in 2018, it’s estimated that up to 7500 people are still charged for their home based support, even after free personal care was brought in. However, due to some integration authorities not responding, we think this is a very low estimation of the numbers of people charged.
- Whilst care charges contribute 3% (or approx. £42.6m) to the cost of social care support in Scotland, this 3% can be as much as 100% of disabled people’s income after basic housing costs. It can cost up to 40% of the money raised to collect these charges and only about half of the money collected goes back into social care.
COVID-19 and social care support
- In July, after lockdown had been eased, our survey showed that 79% of respondents in receipt of social care support prior to lockdown, had lost some or all of their social care support during March.
- Just over a third (37%) of respondents that had had their support reduced or stopped were still being asked to pay care charges to their Local Authority.
- This is despite the additional £100million that the Scottish Government provided to Local Authorities to sustain social care support. There is evidence that much of this money has neither reached all the people needing support nor third sector providers.
- The Social care support system has been under increasing pressures over the last ten years in spite of well-intentioned policy and co-produced reforms. Good work has been done to create visions, set out ambitions and even to develop, in co-production with the People Led Policy Panel, a programme for reform of adult social care support – it just hasn’t yet led to positive impact on people’s lives, mainly because the system is broken.
A deeply flawed System
- The Coronavirus pandemic has exposed the long-term fundamental flaws in the system and the devastating consequences for disabled people and unpaid carers are clearly seen.
- According to our survey in July, the pandemic has also opened up new inequalities and loss of rights, with increasing impacts on physical and mental health, which will likely put more pressure on health and other services.
Our Shared Ambition
In “Our Shared Ambition on the future of social care support in Scotland” , Inclusion Scotland and a number of other DPOs and supportive third sector organisations set out the different ways in which people may need social care support. It called for sustained public investment in the development of a modern, nationwide infrastructure of social care support as part of Scotland’s wider national infrastructure. This infrastructure will protect, promote and ensure human rights and tackle inequalities and it should facilitate the delivery of a statutory framework of common outcomes, underpinned by clear and consistent rights and entitlements.
This was not in the 2020-21 Programme for Government. Instead, there is to be another review, and without even the equal involvement of people who need social care support, as their views will merely be ‘taken into account’ and the review will merely “consider the needs, rights and preferences of people who use services, their families, and their carers”. We are now pleased to acknowledge that one person with lived experience of receiving social care support has been invited onto the review panel.
The Independent Living Fund (ILF)
A short-term potential action towards meeting the needs of people with the highest social care support needs across Scotland would be to re-open the Independent Living Fund Scotland (ILFS) to new applicants and extend what the funds can be used for. Re-opening it is being very actively considered in Northern Ireland.
The ILFS is a means of ensuring money designated by Scottish Government for social care support is spent on very much needed social care support. This could be done before the election in May if begun now.
What needs to happen?
- The UK ILF was a national resource dedicated to the financial support of disabled people with high support needs enabling them to choose to live in the community rather than residential care.
- ILF funding enables individuals to pay for care so that they can be supported in their homes and within their local communities. Evaluations suggest a high level of satisfaction with the fund for those who receive it.
- The UK ILF closed to new applications in 2010 and closed its doors fully in 2015 with funds for recipients in England and Wales transferring to Local Authorities. The Scottish Government was persuaded by a strong campaign from disabled people in Scotland to retain ILF for existing recipients, and a new agency, ILF Scotland (ILFS), started July 2015, with the responsibility to administer the fund in Northern Ireland. It is a Scottish public body governed by a Board of Directors, appointed by and accountable to Scottish Ministers.
- ILF Scotland currently provides support to 2634 people (Scotland 2209; Northern Ireland 425), who received it before the UK ILF (its predecessor) closed its doors to new applicants in 2010. It was not open to new applicants but the ILFS has since established a small Transition Fund for young disabled people to help them do something they’d like to do.
- The old model ILF is not perfect and would need improvements. At the moment, people pay a ‘personal contribution’ towards their care (now capped at £83 per week) and what ILF monies can be spent on needs to be expanded to be aligned more with the principles (nb not the practice) of SDS.
- Exactly what it looks like and how it is delivered must be co-designed with people who use or need social care support.
- If it was fully re-opened and funded to extend to cover other support needs, it has the potential to be a starting point for a national social care support system.
Other models could also be considered in future reform of adult social care support post COVID-19, such as Social Security Scotland. For this, the Social Security Charter complete with rights and entitlements was co-produced by Scottish Government, members of experience panels and recruited people with lived experience from representative groups (which had inputted to the original policy development).
However, for this Programme for Government, reopening the ILF in Scotland would have provided ready and timely evaluation, and possible evidence of how such a model might be built on to create a national care support system, needed to take the current debate further.
Any new national system to govern local provision of social care support should be co-designed and produced with people who use or need social care support and be set up to ensure that disabled people’s human rights to independent living and equality for disabled people are achievable
For more information, or to discuss the evidence and recommendations, please contact Dr Pauline Nolan, Head of Leadership and Civic Participation: email firstname.lastname@example.org; or call 0131 370 6705
 NHS National Services Scotland June 2019 ‘Insights into Social Care in Scotland Support provided or funded by health and social care partnerships in Scotland 2017/18 Figures to March 2018 An Official Statistics publication for Scotland (Experimental) https://www.isdscotland.org/Health-Topics/Health-and-Social-Community-Care/Publications/2019-06-11/2019-06-11-Social-Care-Summary.pdf
 For example, please see https://ilf.scot/wp-content/uploads/2020/07/44188-ILF-NI-Impact-Evaluation-Report.pdf