Talk to Housing and Support Alliance Independent Living conference
Absolutely cracking conference put on by the Housing and Support Alliance today. Real unity in the room that we need to fight for the right to independent living in these challenging times.
My slot was given the title ‘Rights are more important now than ever’. This is roughly what I said:
What’s the point of people with learning disabilities having legal rights? Some people (including I suspect some lawyers) don’t think that this area of law is ‘real law’. On this view, local authorities and NHS bodies should just be left to get on with providing whatever support they think they can afford, perhaps subject to inspections from official bodies to make sure things don’t get too bad.
But in the 21st century as a society we don’t think that’s good enough. Instead most of us sign up to a view that everyone, including disabled people, has fundamental rights that have to be respected.
We have these rights because we are human – that’s why they are called human rights. So when councils put disabled people in places where they are not free to leave and they are subject to continuous supervision and control (watched all the time), this is a deprivation of their liberty, the same as it would be for everyone else. It needs to be properly justified and approved by law to stop there being a breach of Article 5 of the ECHR, the right to liberty.
But we also recognise in the 21st century that if we just have one set of rights for everyone we won’t ensure that everyone’s rights are properly respected. So we reflect the fact that different groups have different needs and set out their rights – women, children and finally and most recently disabled people.
So Ian’s right* – we are part of the civil rights movement. And Gary’s right* – we need to save the Human Rights Act. I think it’s striking that two of the people fronting the Act for the Act campaign are Jan Sutton and Mark Neary. Jan is a disabled women who used the Human Rights Act to get a package of care which meant she could live with dignity. Mark, as I imagine everyone here knows, can speak to the power of the Human Rights Act in helping get his son Steven home. So the Human Rights Act is fundamental to realising disabled people’s human rights.
We now have the UN Convention on the Rights of Persons with Disabilities (the CRPD). This is our Bill of Rights. It is a full package of rights, which if respected in every case would mean true independent living and community inclusion for every disabled person. Although it is still not part of our law, in the same way that the European Convention on Human Rights is through the Human Rights Act, the courts are giving the CRPD ever greater weight – for example, in helping find unlawful discrimination against disabled children in hospital who lose their disability benefits after 84 days.
If people think about the CRPD, they generally think about Article 19 – described as the right to independent living. But Article 19 is actually headed ‘living independently and being included in the community’. And that’s what it’s about – real inclusion, meaning ordinary lives, and the kind of love and relationships Sara** was talking about.
And then we have the next set of rights, those given by Parliament in specific acts like the Care Act 2014. These rights can move around and change in the details, but the basics endure.
For example the right for disabled people to have their eligible social care needs met in full regardless of the cost carries on from the old scheme to the Care Act 2014. However – if there are two ways of genuinely meeting the person’s needs the state can meet needs in the most cost-effective way; we see straight away how disputes arise.
But the basics aren’t enough. So there’s a right to personal care – but what about as Sally and Laura*** say, when your personal care gets ‘done’ by someone you don’t know, who only has 15 minutes with you and doesn’t have the time to get to know you or show you respect. Is that rights-respecting care? Of course not – either under the Care Act or the Human Rights Act.
So rights are always ‘important’, in the sense that if the law requires something to be done it must be done. Law trumps everything – even (surprise surprise) local authority policies.
But why might it be thought that rights are more important now than ever? The answer is obvious; because disabled people are under sustained attack from government policies that cut the specific fund to support independent living, undermine entitlements to social security, reduce access to legal aid and make it virtually impossible for councils to comply with their statutory duties through reducing their budgets.
And if it’s hard for councils now, we know that after the next spending review later this month it will almost certainly get worse. The Local Government Association say that with the expected cuts there will be:
- Legal challenges because councils aren’t meeting their Care Act duties
- Less dignified care
- More unmet need
So rights matter because they are a way of fighting back. They give content to our shouts where people are living impoverished non-lives, as Sara said. If there is a legal duty to provide – for example – the personal care a disabled person needs to lead a dignified life, then the state can be made to provide it.
Tom**** seems to be saying we have to accept the cuts. I say no – we have to enforce the law. Isn’t it interesting that Tom says – rightly – that where you live is going to make a massive difference to the support you get. But yet the law of England is the law of England…
Should people keep paying for their support with their freedom – definitely not? Should the number of people getting state support be reducing, as Tom showed? Definitely not – there has been no legal change that would allow this. Indeed councils aren’t allowed any more to have only care for ‘critical’ needs. If anything eligibility criteria should be getting more generous rather than reducing.
We can’t fund fewer people or give them less support because the law doesn’t allow it. Indeed there is an open question as to whether Elaine McDonald’s case would be decided differently now the Care Act is in force. Would the Care Act well-being duty allow for the provision of incontinence pads in cases such as this.
With respect to Tom, it shouldn’t be a choice between libraries and social care. There are duties to have both. If the government wants to change that, they need to ask Parliament to change the law.
Until they do, surely soon we will see legal challenges by local authorities on the basis they haven’t been given enough money to comply with their legal duties? Indeed we already have – two councils took the government to court to get more funding to implement the Care Act, and it seemed the government backed down and provided the funding once the court granted permission for the claim to proceed.
The legal route to achieve this is judicial review – and the essential point I want to make in this short talk is that legal aid is still available to bring judicial review challenges. If commissioners are becoming a ‘hard to reach group’, sending them a pre-action letter before a judicial review often gets their attention.
So what should disabled people, families and allies do if their rights aren’t being respected? There are lots of options – contact their MP, start a petition, chain themselves to the council railings. I’m not discounting any of these – but I would say that one of the first things to do is get specialist legal advice. If you search ‘rightsinreality solicitors’ you will get a list of some of the solicitors with disability expertise who have legal aid contracts and can advise disabled people and family members. There are issues about financial eligibility – having too much money to get legal aid – but it is always worth checking this out with a specialist solicitor, don’t just use the online calculator.
I’ve never known someone with a legal problem take advice too early, because a good solicitor will always say if there are other things to do than go to court. But I’ve known plenty of people take advice too late, when much of the damage caused when rights aren’t respected has already been done.
It’s also vital to remember that for every case that goes to court there will be a hundred if not hundreds that get set sorted out well before, with a better package of support.
At the same time we need to improve and strengthen the legal framework. That is the point of the #LBBill which has been crowdsourced by the incredible Justice for LB campaign, with disabled people, family members and allies across the country. It would:
- make the right to independent living in Article 19 of the CRPD part of English law;
- stop there being caps on the cost of care;
- require the state to respect people’s wishes as to where they live;
- ensure that there is enough community support available; and
- sort out problems with the Mental Health Act and Mental Capacity Act.
Many of these ideas can be read in to the existing law – and we need to push back when people deny that these rights exist. It is vital, as Sally says, that we don’t pretend everything is ok.
But #LBBill would make everything clear and put the rights in one place. We will have another go at getting the Bill into Parliament when the ballot for private members’ bills happens next summer. We are also very encouraged that the Law Commission is considering some of our ideas in its new scheme for managing deprivations of liberty.
We are less encouraged by the Department’s recent response to the No right ignored consultation. Issuing guidance isn’t going to do the job.
I want to end on some striking research which was covered yesterday by the brilliant team at Community Care. It concerns the new right to advocacy under the Care Act 2014, which is absolutely essential if that Act is going to make any real difference to people’s lives. Yet we learn that advocacy referrals are ‘way below’ expected levels; Reading council expected to provide 4,000 hours of Care Act advocacy this year, yet six months in they’ve only provided 170 hours. And this is a council that says it is actively promoting the new right. So we have to keep pushing to make these rights real.
My final conclusion is this. It is unacceptable for Parliament to pass laws and the government to sign treaties creating new rights, and then for funding to be cut to make it impossible for local bodies to realise them. This is the challenge for the next few years – and I believe rising to that challenge means using the law to enforce the extensive rights disabled people now have. If we bring the cases to show the law isn’t being respected then the funding we need must follow – that’s what the rule of law requires.
If government wants to reduce support for disabled people they need to get Parliament to change the law and face the consequences at the next election. We can’t let them get away with doing it by stealth through ever increasing cuts to budgets.
*Ian Birrell and Gary Bourlet co-chaired the conference (brilliantly). Ian is a journalist and Gary is from People First England (and judging by the mood of the conference a future Labour leader)
** Dr Sara Ryan gave an earlier keynote talk challenging the term ‘independent living’ being applied to ‘state supported non-lives’
***Laura Broughton and Sally Warren from Paradigm gave an earlier talk challenging people not to pretend things are as good as they can be
**** Tom Noon, Chairman of Cordis Bright, spoke powerfully about the present realities in relation to both housing and support