A public care system must focus on independent living

Submitted by AWL on 3 May, 2020 - 12:27 Author: Jamie Hale
'Nothing about us without us' banner

I agree with Sacha Ismail's argument in his survey of social care that the system needs radical reshaping – though we may disagree about the shape.

For me, the focus of social care needs to be independent living. Our priority must be enabling people to have control over the care they receive, whether through direct payments or commissioned care. People should only be living in institutions where that is their genuine preference, and should be given whatever resources they would require to live in the community.

The number of care home deaths during Covid-19 really highlights the danger of institutions, especially when we consider that a lot of the people in those care homes are not there voluntarily. They’ve been admitted either from hospital or when they could no longer "manage" at home, often with minimal consideration given to whether they could manage better at home were they given more, or more appropriate support.

Sacha’s suggestion that care homes and agencies should be taken into public ownership is interesting. Certainly, I am opposed to private profit being made out of public money, but I believe that these facilities should be run and managed by the people living in them, including staffing, expenditure, and construction decisions. This should be done using public funds and not for profit, but if people don’t have full choice and control in how they live, how can these places be called “homes”?

One model for this might be the Students’ Union model – in which the students are in charge through elected representatives, and the staff exist to serve the political leadership and to run the institution in the direction led by the elected leadership. For different facilities, that will mean different things, with different levels of member involvement and control, but ensures that these spaces are run in the way the residents truly desire. This could be adapted for residents with everything from profound and multiple learning disabilities to Alzheimer’s.

Where people are living in the community, they should be supported to take as much control over their care and support as they wish, whether through direct payments or other models, such as a notional budget. To many disabled people direct payments are the best the social care system has to offer, and if more support was offered they would be appropriate for far more people.

Direct Payments used to be direct cash transfers of the amount that commissioning someone’s care cost. These went to independent living organisations, who then spent those funds as that individual requested, to meet their care needs.

These were politically justified in different ways, depending on who you asked. For disabled people they were the culmination of decades of fighting to leave institutions and exist independently in our homes, while to the government, they were justified using the rhetoric of privatisation and of cost-saving – that it was far cheaper to give disabled people the money to employ someone on a minimum wage basis than to give an agency that money, when the agency was run on a for-profit basis.

Disabled people knew the arguments were being made in this way, but for many of us, direct payments offer an absolute freedom. I can employ whomever I want. They come in at the time I want, to support me with the tasks I want. I choose the people providing me with intimate personal care, I hire them, I manage them, I fire them when things go badly wrong. Without that, my quality of life would be almost non-existent. I’ve barely coped in short periods where I’ve relied on care agencies, and council-run care wouldn’t necessarily be any better – and many people report it as being worse.

Accessing personal care in ways we can control is as much an issue of consent as it is politics. If someone is engaging with my body in incredibly intimate ways I want them to be someone I’ve selected and trained, not a stranger sent in by agencies – something I’ve experienced too often.

The terms and conditions of the workers we employ through direct payments are important, and having people on good terms and conditions is crucial. Disabled people are often only allowed to use zero hour contracts while on direct payments, and thus they become baked into people's lives, when stable salaries would be preferable, both to the personal assistants we employ and to ourselves.

We are also given very little support when we start on direct payments, and as a result people often end up with badly drafted contracts and illegal working situations – whether it’s health and safety violations, not giving a contract out quickly enough, or not understanding fundamental workers’ rights. Without support to embed proper policies and workers’ rights into our care packages, people end up employing badly – not through ill-intent but through lack of knowledge.

Disabled people are also often not given enough care funding to meet our needs. That leads to people paying less for care, only offering flat rate sleep-in shifts at night or offering a low weekly wage using an average working hours agreement. This means workers' rights are undermined in an attempt to preserve our own rights and independence, but in a situation constructed by our funders. There should be no limits to the funding for an individual’s care, we should not be told, as I have, that above a certain limit a care home will simply be imposed. People’s right to live in the community should not be circumscribed in this way. Where people need more funding in order to meet their own needs whilst creating good working conditions, this should be given.

Workers rights should be strengthened in general, but especially in this industry often described as "low skilled" – though we’re seeing now how skilled and important they are. People working in them should be given the resources to challenge poor employers and poor employment practices – including when they’re working directly for a disabled employer, and the disabled employers should have all the resources we need not to put someone in an illegal situation.

Direct Payments used to be supported by Independent Living Organisations. For some people they just advised, or offered sample contracts, paperwork, and support with managing PAs, while for others they managed budgets and took on the full responsibility as employer. They used to be funded by Local Authorities to implement direct payments, but have lost funding and disappeared from around the country. Rebuilding those as part of reshaping care would allow people who currently don’t have enough support to manage direct payments to successfully become employers whilst also ensuring that workers rights were respected and extended.

For disabled people, service providers, local authorities, and clinical commissioning groups are not our allies. We have spent so long fighting for every hour of care support, justifying our needs in fifteen minute breakdowns, forcibly medicalising ourselves in the hope that by doing so we will receive something towards the support that we need to live independently. We are not going to trust that public ownership will mean any more care, support, or funding for us without a legislative framework that guarantees our right to independent living.

Any move of care into public ownership should be done with an explicit framework that centres independent living, with disabled people commissioning services rather than simply being “service users”. We should be recognised as the experts that we are in finding the support we need to meet our needs, and should be the architects of the services to meet those. If this is truly embedded, with direct payments extended, and control of agencies and residential placements in the hands of the people using them, then public ownership could be the start of a real step forward – but if this is not done, then it merely moves disabled people from one oppressor to another.

Add new comment

This website uses cookies, you can find out more and set your preferences here.
By continuing to use this website, you agree to our Privacy Policy and Terms & Conditions.