Insulted by the scrapping of the National Care Service, disabled people will renew our struggle for deep and principled care service reform, writes April O’Neil.

“We feel like we have been discarded.” That’s what disabled people say when you ask them how they feel about the decision to scrap the National Care Service (NCS) Bill. They also say, “it feels like the Scottish Government are bowing down to COSLA”.

Inclusion Scotland’s People-led Policy Panel (PLPP) was one of the key stakeholders in the development of the NCS plan. The PLPP is a group of supported people and unpaid carers who have experience accessing or needing social care support. Funded by the Scottish Government, its aim is for people who use or need adult social care support to be included as equal decision makers in the design of adult social care policy.

Supported people (including deaf and disabled people) and unpaid carers are angry at the Scottish Government’s decision to scrap the NCS Bill.  An open letter from the disabled people’s movement spells it out: “The Movement and its members, alongside the third sector and carers have invested huge amounts of time, energy and emotion in trying to develop a truly participative and positive National Care Service; one which will value the user as well as the workforce.  This must not be wasted”. The letter called for the Scottish Government, COSLA, unions and political parties “to work together make Social Care in Scotland as precious to the nation as the Scottish NHS.”

The Promise of the NCS

The NCS was supposed to herald the shake up the social care support system. In 2021, the Independent Review of Adult Social Care (IRASC) recommended improvements to the adult social care system in Scotland. Its Chair, Derek Feeley, had ensured that IRASC had consulted with supported people and people who worked in health and social care. It found that social care support cannot flourish without a new delivery system and recommended an NCS that is co-produced with people with lived experience of adult social care support. This recommendation led to the National Care Service Bill.

Social care support has been delivered by local authorities (LAs) for many years. Supporters of the status quo argue that we need local democratic accountability and that LAs know their communities best. However, the system frequently fails to meet disabled people’s needs or uphold their human rights and dignity. Supported people have been telling Inclusion Scotland for years that the local authority system does not work for them. Most LAs only support people whose needs are critical or substantial, leaving others to fend for themselves until ultimately their needs become critical.

The plan was that the NCS would take responsibility for service delivery away from local authorities and set up new Care boards. The plan was not perfect, but most supported people were backing the bill because instead of local authority control, it would create a national system with consistency, national standards, and ministerial accountability.

But then, in July 2023, the Scottish Government made a deal with COSLA and the NHS that undermined these principles and broke the promises underpinning the NCS plan. Two Stages of Betrayal

The deal, or ‘Shared Accountability Agreement’, meant that service delivery of social care support would remain with LAs. Many supported people felt shocked and angry when they learned this agreement was done behind closed doors without consultation. It undermined the idea of co-design, and we lost trust in the process. The Government said that it was the only way to get the Bill past Stage One, but the move meant that the Bill had to undergo major changes, and the idea of local care boards was scrapped. The amended bill focused on reforming health and social care partnerships and had little resemblance to the original Bill. Our voices had been diluted. Disabled people felt like they were being used as a political football in debates, to score points against other political parties. We felt objectified. Many supported people felt that little would change about the existing flawed system, with local authorities remaining in charge of social care support delivery.

COSLA called the Bill a power grab by Ministers and a top-down approach to governance, insisting that social care support delivery needs to stay with local authorities. In doing this deal, the Scottish Government made concessions to COSLA. They also responded to unions’ workforce concerns. The workers support us, often in our homes, and we do not discount their interests as a key concern. But supported people were no longer at the centre of the debate.

Despite these Bill amendments, Inclusion Scotland and the PLPP were still working hard on our own proposed amendments we co-designed with our membership. But then, in November 2024, the Scottish Greens along with COSLA pulled support from the Bill, leading to the Minister announcing a delay to Stage Two. For Government, losing the Scottish Greens’ support meant losing the political majority necessary to get the Bill passed.

The Scottish Government recently announced the decision to scrap the majority of the Bill. The PLPP still think that radical reform is needed. We would like to recentre the voices of supported people and unpaid carers in this process. The rest of this article articulates those voices.

The Need for Reform

The bottom line is that there is increasing demand for social care support and not enough investment. With budget cuts and tighter eligibility criteria, many disabled people are struggling to get even their basic needs met, such as getting washed and dressed, going to the toilet, or eating. 

During the pandemic, support was reduced, and in some cases stopped completely. “I have gone from 20 hours of care (seven hours of which were personal care) to ZERO”, an Inclusion Scotland research participant explained. “I am now bedbound completely because of this.”  In Glasgow, more than 1800 care packages were cut during COVID. Some were not re-instated fully or at all, and the Independent Joint Board recently made further cuts to care budgets.

Research by Inclusion Scotland, Glasgow Disability Alliance and the Scottish Human Rights Commission illustrates how different LAs violated many basic human rights. LAs have had years to demonstrate that they can deliver good social care support and they have unequivocally failed. Lack of resource has been their argument, but during the pandemic, the Government announced £100 million in funding for LAs to spend on social care support — there was no evidence of where that money went.

There is concern that if LAs remain in charge of delivery, it “reverts to the status quo”. Many PLPP members have had bad experiences with LAs not meeting their needs and felt that there has been no accountability: “Nothing happens unless they [Local Authorities] are forced.” One said that six years ago she was told that she had not yet had an assessment that understood her condition. She still awaits one. “Local authorities do not follow statutory guidance as it is not law”, one participant explained. Reforming local services is about reshaping existing services that do not work. That is not enough. We need wholesale reform of the system.

The PLPP wanted a national system with ministerial accountability to improve consistency and equality of services. Current legislation is interpreted differently by LAs, leading to the ‘postcode lottery’ of social care support: if a supported person wishes to move to a different part of Scotland, they risk having their package cut due to different systems of eligibility and resource allocation. One PLPP member moved local authority four years ago and struggled with the lack of portability of support packages. “Moray, and Perth and Kinross, have been arguing over who’s to deal with my care package this whole time,” they explained. “Perth and Kinross don’t want to take me on, meaning my social worker and everything are up in Moray.”

The current model allocates an available budget using eligibility criteria which is currently set at “critical need” in most areas. This means that people often must be at a crisis point to receive support. One PLPP member who was a senior social work manager was told he was being idealistic by telling clients what their rights were and what support was available. There were often not enough resources to meet their needs. He was told not to raise their expectations.

Accessing support is a human right and the National Care Service may have enabled people to realise that right. It could have given supported people a chance to live a life of dignity with choices that non-disabled people take for granted.

To achieve these rights, we need representation: ‘nothing about us, without us’. As one PLPP member explained: “If the Scottish Government wishes the involvement of lived experience of service delivery to work, then much greater attention needs to be given to empowering the status of the person [and their collective] with lived experience of service.” We need supported people to be “the subject of social care support, not the object of it.”

A key disappointment is removal of the National NCS Board to be replaced by a non-statutory board to oversee improvement and write guidance. In co-design, we asked for the National Board to “have teeth.” Ultimately, guidance can be ignored. Since the Bill has been scrapped, now more than ever we need to return the focus to the principles underlying the need for reform. The IRASC said: “Everyone in Scotland [should] get the social care support they need to live their lives as they choose and to be active citizens.” Inclusion Scotland remains committed to salvaging improvements to consistency and raising standards across social care support delivery.

April O’Neil is People Led Policy Co-ordinator at Inclusion Scotland. For more information contact april@inclusionscotland.org.

Inclusion Scotland believes in and is founded upon the social model of disability, we are disabled by the barriers we face rather than our impairments themselves. Using the social model, we work to achieve positive changes to policy and practice, so that disabled people are fully included throughout all Scottish society as equal citizens. It does this by:

• Influencing decision-makers, ensuring that disabled people are involved in developing effective solutions for policy and practice, that reflect our expertise by experience and meet our needs and aspirations.
• Supporting disabled people to be decision-makers themselves, promoting the equal representation of disabled people as policy-makers and our right to make decisions about our own lives.
• Developing capacity, awareness and engagement, of disabled people, disabled people’s organisations and the organisations and institutions that affect our lives.