Inclusion Scotland MSP Briefing: Independent Review of Adult Social Care Support

This MSP briefing was written for the Scottish Parliament Debate on Programme for Government 2020-2021 02 September 2020

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.

While Inclusion Scotland would agree that a fundamental shake-up of adult social care services is desperately needed, and on that basis supports the need for an independent review, we were deeply disappointed by the announcement in the Programme for Government for the following reasons:

1. Immediate action is needed to address the long-term fundamental flaws in the social care support system that were glaringly exposed and exacerbated when the pandemic struck. None was announced. Yet, it would have been entirely feasible, to re-open the Independent Living Fund for people with high support needs and have this in place before the Election. There is strong evidence that the ILF can deliver the kind of system we need, bringing social and economic benefits[1]. We know that Northern Ireland is very likely to re-open the ILF for new applications and there is no reason why this could not be done in Scotland. Re-opening ILF Scotland for new applications would mean further investment to offer the fund to more people with higher social care support needs.

2. This, and a national approach to social care support built on such a model, would be a way of ensuring that Scottish Government money for social care support is spent on social care support. As it stands, there is evidence that the £100 million announced to enable local authorities to sustain social care support during the pandemic has largely not reached the people using social care support or third sector providers. There is no transparency and therefore no means of holding those responsible to account. This demonstrates that there are fundamental flaws within the system that go beyond the fact that more resources are needed.

3. The consequences for disabled people and unpaid carers have been devastating. Since the pandemic, evidence from Inclusion Scotland’s surveys, other Disabled People’s Organisations and carer organisations shows that people have had care support packages they rely on cut or completely withdrawn, sometimes overnight.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. Some 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, with worrying expectations that they will continue to provide care because they and the person they care for have somehow “coped”. Many have taken on care for the first time because critical social care has not been available.

4. However, the failings of Scotland’s social care support system are not news. There has long been a persistent chasm between Scottish Government’s declared aspirations for social care support, and the experience of people who use it, or the many who need it but do not receive it. This is despite a great deal of good work to develop statements on visions and ambitions for it, dating at least back to 2013[2], including ‘Our Shared Ambition for Social Care Support’[3].

5. A programme for the reform of adult social care support has been underway for approximately the last two years[4]. The People-led Policy Panel (PLPP), run by Inclusion Scotland and made up of diverse people who use social care support and carers, has been actively involved in co-producing this with Scottish Government and other stakeholders. Yet now it seems the independent review will merely “take into account the experiences of those supported” and “consider the needs, rights and preferences of people who use services, their families, and their carers”[5]. This is worlds away from us being at the heart of co-designing reform as equal partners.

6. It is therefore very disappointing that there is no representation on the review advisory panel from organisations of – rather than for – people who use social care support. We hope there is still time to rectify this by finding a way to place lived experience at the centre of the review. Because if a service doesn’t work for the people who use a service, that service has failed, and the only way to know is by asking them.

7. It is also worth noting that the Programme for Government in 2018/19[6] made a commitment to “gather views and consider evidence for a potential new national scheme to provide extra financial support to people with the highest social care needs, so that they can choose to live independently in their homes and in their local communities.” It is unclear what become of this, or why it is only now that a fundamental review has been announced.

8. Disabled People’s Organisations and carers organisations very recently wrote an open letter to the Cabinet Secretary[7], calling for the reopening of the Independent Living Fund right away and the establishment of a rights-based National Adult Social Care system that would give people using it choice and control over who provides their support and how they use it; which would enabled us to achieve human rights, equal citizenship and independent living, that is distinct from but closely aligned to healthcare and which is free at the point of use.

9. It is high time the importance of social care support in its own right receives due recognition, as an investment in Scotland’s people, society and economy. If people cannot get the support they need even to get out of bed in the morning, let alone live their lives, how are Scottish Government goals for equality, inclusion and human rights to be achieved? These are basic, fundamental rights that should never be a matter of ‘local priorities’. Neither should people have to pay just to be able to exercise those rights.

10. Figures show 67,985 people received home care between January-March 2018[8]. Yet due to over ten years of austerity and the ever more stringent rationing of social care support to those with the highest levels of need, there is significant unmet and unrecorded need.

Thus, while Inclusion Scotland welcomes the fact that the need for a national social care support system is now at last firmly on the political agenda, there remains a pressing need for urgent action to address already well-evidenced, well-understood, much discussed problems with the current system, and what is already known needs to be done to address them. 

There is no case for further delay.