Disabled people’s organisations and carers’ organisations have come together to call on Scottish Government to take urgent, radical action to create a social care support system worthy of the name. In an open letter to Cabinet Secretary Jeane Freeman, they describe how the pandemic has exposed the long-term fundamental flaws in the system, and the devastating consequences for disabled people and unpaid carers when it struck.
People have had essential care cut or completely withdrawn, leaving some bed-bound and unable to get food, with families and unpaid carers left somehow to cope. Meanwhile, it is unclear what has become of the £100million Scottish Government announced to enable Local Authorities to sustain social care support, which largely does not seem to have reached support users or third sector providers.
While acknowledging that good co-produced work has been done to develop visions and reform programmes, the fundamental flaws in the system remain. The organisations therefore call for the establishment of a new national, transparent and accountable social care support system of rights-based entitlements; one in which users have choice and control over who provides their support and how they use it; one where they do not have to pay for the support they need merely to achieve equal citizenship and human rights. Social care support should rightfully be seen as an investment in Scotland’s people, society and economy. Such a system should be co-designed with people who will use it.
While it may inevitably take some time to set in place, the organisations say a start should be made right away by re-opening the Independent Living Fund. It could be done. Northern Ireland is looking to re-open it. There is no good reason to delay re-opening it in Scotland.
You can read our open letter further down this page;
Our open letter to the Cabinet Secretary:
28th August 2020
To: Ms Jeane Freeman
Cabinet Secretary for Health and Sport
Dear Cabinet Secretary
Radical action needed to build a Social Care Support system worthy of the name
We warmly welcome the First Minister’s recent remarks, reported in the media, concerning the need for a shake-up of social care support in Scotland. It has long been clear that the current system has failed to achieve the goals of independent living and self-directed support. It has resulted in a vast amount of unmet need, which pushes people into crisis, directly undermining the goals of prevention and increasing demands on healthcare and residential care.
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. However, there has been a persistent chasm between Scottish Government’s declared aspirations for social care support as set out in the coproduced Shared Vision for adult social care support and the reality. This is not news. Neither is it to overlook the fact that some providers have made phenomenal efforts to continue to offer good support, choice and control. However, we are aware that they have often had to do that in the teeth of a system that has sometimes hampered their efforts and, on occasion, has even undermined them. This is not sustainable.
The long-term, fundamental flaws within the current social care support system have had devastating consequences, even before the pandemic struck. Since then, those flaws and the impact on people’s lives have been plain for all to see. A government that cares about equality, inclusion and human rights surely needs to take action.
In summary, since the pandemic, our evidence shows that people have had care support packages they rely on cut or completely withdrawn, sometimes overnight. In some cases, this left people bed-bound and unable to get food. People across Scotland have not had their care packages reinstated. In some cases, they are still paying charges for care they no longer receive. Unpaid carers and families have often had to provide significantly increased levels of care, with services withdrawn or closed and with worrying expectations that they will continue to provide care because they and the person they care for have “coped”. Many have taken on care for the first time because critical social care has not been available.
All this is despite the Scottish Government’s welcome announcement of an additional £100million for local authorities to be able to sustain social care support. Yet this does not appear to have reached the people who need social care. Third sector providers too report that resources have been slow to arrive, where they have arrived at all. So where has the money gone? Where is the accountability?
What we have is a system that does not offer the user choice purportedly associated with private sector provision, nor the equitable treatment that the public sector should be equipped to deliver. Austerity and under-funding have reduced eligibility, creating a toxic culture of rationing, alongside unmet and unrecorded needs. Meanwhile public funds available for social care support are not necessarily transparently spent on social care support and it can be unclear where accountability lies. Competitive tendering mostly seems to serve to drive down wages, contrary to Fair Work goals, as well as driving down service quality and user satisfaction.
As far back as 2013, the Scottish Government, alongside CoSLA and the Scottish NHS signed the Shared Vision for Independent Living in Scotland with the Disabled Living Movement. Then, in 2016/17, came ‘Our Shared Ambition for Social Care Support’, co-produced with disabled people and other key partners. Since then there has been much good work, involving multiple partners and with people who use social care support at the heart, to develop a Reform Programme for adult social care. However, the fundamental flaws in the system remain.
We have called before, and now call again, for urgent and radical action to realise the often-declared ambitions for social care support. The damage the current system is doing to the lives of disabled people, older people and carers should not be tolerated a moment longer.
We believe that a radical shake-up of social care support is therefore required to create a national social care support system that conforms to the following principles:
a) A system that is no longer based on ‘life and limb’ support to keep people alive, but which enables those with social care support needs to access the resources and support they need, with genuine choice and control over who provides it and how they use it to live their lives; in order to achieve independent living, equal citizenship and fulfil their human rights. This also includes ensuring that unpaid carers have the support they need to provide care and, critically, the choice on what support they are willing and able to provide; in partnership with the person they provide support to.
b) A system that is transparent and accountable to ensure that Scottish Government money designated for social care support is spent on social care support.
c) A system of national, rights-based entitlements that gives people rights to resources to meet assessed needs, thereby enabling portability and putting an end to the post-code lottery.
d) A social care support system that is clearly distinct from the healthcare system but which is well aligned and integrated with it.
e) An end to competitive tendering that drives down quality, reliability, user satisfaction and wages.
f) A system that is free at the point of use.
g) A system that is co-designed with people who use social care support and unpaid carers: with participation supported by capacity building to boost knowledge, confidence and accountability at local, national and provider-levels.
A start should be made right away by re-opening the Independent Living Fund (ILF) to new and wider applications. While other action may necessarily take more time to set in place, there is no reason to delay this. There is strong evidence that the ILF can deliver the kind of system we need, bringing social and economic benefits (see for example: https://ilf.scot/wp-content/uploads/2020/07/44188-ILF-NI-Impact-Evaluation-Report.pdf). We know that Northern Ireland is very likely to re-open the ILF. So why can’t we? Indeed the ILF could provide a model upon which to build a National Social Care Support System with rights, dignity and empowerment at the core. Furthermore, we doubt that anyone would want to see a review of social care support that merely absorbs time, energy and resources but delivers no real change for and with people using social care.
Social care support is an investment in Scotland’s people, society and economy. We hope to have the opportunity to work with you to create a social care support system worthy of the name and of the ambitions for it that we share.
Thank you for listening to our concerns and we look forward to your response.
Sally Witcher: Inclusion Scotland
Tressa Burke: Glasgow Disability Alliance
Florence Garabedian: Lothian Centre for Inclusive Living
Morven Brooks: Disability Equality Scotland
People First Scotland
Etienne d’Aboville: Glasgow Centre for Inclusive Living
Fiona Collie: Carers Scotland
Claire Cairns: Coalition of Carers in Scotland
Mahmud Al-Gailani: Vox Scotland
Communications regarding this letter can be sent care of Sally Witcher: email@example.com (Inclusion Scotland, 22-24 Earl Grey Street, Edinburgh EH3 9BN).