Celia Thomas: Every disabled person should be able to live a life of dignity and respect

Last week, the House of Lords debated the future essential services run by local authorities. As local government is so important to Liberal Democrats, it’s no surprise that several Lib Dems took part in the debate.

Celia Thomas talked about two critical issues – social care and, first the provision of public toilets and the impact that cuts have on isolation of people with continence problems.

She warned against the idea that we need to provide support for disabled people so that they can work as this can promulgate the idea that there are deserving and undeserving disabled people. Every disabled person, she said, should be able to live a life of dignity and respect:

My Lords, I shall concentrate on the provision of social care but, before that, I want to mention something that I would call an essential service but which turns out to be discretionary. Here I shall lower the tone of the debate so I hope noble Lords will not mind; I am talking about the provision of public conveniences, lavatories, toilets or loos throughout the country. Those that are left are now often maintained by town or parish councils, but for how long? In 2010, there were over 5,000 public toilets; now, there are 4,486. Is it right that fast-food chains, supermarkets and coffee shops have now virtually taken the place of public toilets? What happens when these places are closed, when managers are reluctant to let everyone use their facilities or when there are no accessible toilets? We should not forget the silent number of people trapped in their homes because of continence problems.

I turn now to social care. As the noble Lord, Lord Kerslake, said, we are no nearer to seeing the Government’s Green Paper; as late as October, we were told it would be with us by the end of the year. The funding issue is a fiendishly difficult problem because social care encompasses so much and is so little understood. We need a different term; I agree with the noble Lord, Lord Patten, about language. The word “social”, according to the dictionary, means,

“marked by friendly companionship with others”.

But, in local government terms, it has a much sterner face to cover the state’s obligation to help care for children, including those with mild or severe learning difficulties, as well as disabled and elderly adults. It may have to cover playschemes for disabled children, personal assistants, aids and equipment, care at home and residential care.

Not only are we all living longer, but there is now a better survival rate for people with serious health conditions. I believe that the dictionary definition of the word “social” is one reason why so many people think the service is free for council taxpayers rather ​than means-tested, or partly means-tested. Anyone who thinks the answer for even quite severely disabled people is NHS continuing care should think again as it is very difficult to get. As for delays in hospital discharges, these are still causing a problem due to care packages having to be negotiated or re-negotiated. Can the Minister say how the Government have evaluated the impact of health and well-being boards in tackling the increasing number of these delays?

My next question is: where will councils or outsourced companies find enough carers or personal assistants after Brexit? There is increasing worry among people with neuromuscular conditions, for example, about the long-term status in the UK of personal assistants from EU countries, particularly if there is no deal. PAs provide invaluable support to enable disabled people to go about their daily routine, as well as in the working environment through, for example, the Access to Work scheme. A Skills for Care report in 2017 estimated that around 95,000 workers in England’s adult social care sector are from EU countries, and that excludes personal assistants. What steps are the Government taking to incentivise all care workers from EU countries to stay in the UK? There are already about 7 million unpaid carers in the UK, with this figure rising, so we cannot rely on any more. Many family carers are facing serious mental health problems of their own, as the Guardian pointed out last week.

As for funding, the movement for independent living for disabled people has been giving the matter a lot of thought. I am particularly grateful for a discussion paper written by Gerry Zarb at the SPECTRUM Centre for Independent Living, who makes the point that people simply do not rate the provision of social care as anywhere near as important as health, which is why the Government find it so difficult to contemplate solutions that cost money. It is not universally understood that they are both inextricably entwined.

We need to know exactly what value the Government place on the whole social care system. The shortfall in funding is thought to be over £2 billion just to meet existing demand, and we know demand is going to increase each year, but disabled people of working age who may or may not have paid work must not be overlooked. It is sometimes said that the importance of appropriate care for this group of disabled people is that they can potentially become part of the taxpaying workforce, but there cannot be deserving or undeserving disabled people. I hope the Green Paper will make that clear by saying that every disabled person—employed, self-employed, unemployed or retired—should be able to live a life of dignity and respect. Many disabled people active in the independent living movement are keen to help with the whole process of designing, commissioning and delivering support, with co-produced solutions and partnerships between public bodies and service users. I hope that offer is taken up.

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  • Richard Underhill 29th Jan '19 - 10:59am

    “Not only are we all living longer”
    This is a weak point in an otherwise excellent speech.
    The word “all” is rather inclusive.
    Are Celia’s noble friends “all” non-smoking teetotallers?
    Are any of them former coal miners suffering from “the dust”?

  • Joseph Bourke 29th Jan '19 - 11:35am

    Bit pedantic, Richard Underhill – ‘all’ in this context is clearly a reference to statistical averages of longevity that have increased significantly in recent decades. The Lords (Celia’s noble friends) have not historically not been known for their teetotaling abstinence and quite a few seem to enjoy a cigar after dinner or a smoke on the terrace overlooking the Thames.
    The late Lord Haslam was a pit boy who became Chair of the National Coal Board. If Dennis Skinner ever moves to the other place, the Lords will have they will have another former coalminer (although he is an advocate of abolishing the House of Lords).

  • Richard Underhill 29th Jan '19 - 12:58pm

    Joseph Bourke 29th Jan ’19 – 11:35am: Sorry to be thought pedantic. Guilty as charged.
    I also dislike people saying “regular” when they mean “frequent”. In the 1960s a man came into a pub where I was working and claimed to be a regular customer. The boss said that “He comes in every Christmas and asks for a soda syphon.”
    Dennis Skinner said on Desert Island Discs when he would retire from the Commons and was typically scathing about those who do not. Somewhat ageist. These days there are also suitability criteria for admission to the Lords and pressure from peers themselves for reduction in numbers at their restaurant. J. Corbyn has appointed one.

  • In my experience of working with/listening to people with disabilities (in both the statutory and voluntary sector) , a major obstacle to independent living remains the barriers to employment that are put up by employers and indeed some helping agencies, the main excuse for not employing a disabled person being “health and safety” or “no experience”. It’s all very well the government saying their Universal Credit changes are designed to facilitate/encourage/push people into work but the flaw in this (amongst others) is that the work opportunities aren’t there for people who need extra help or indeed the chance to get experience

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