My Lords, I declare my interests as noted in the register, particularly my interests in accessible transport, housing and charities.
The lives of disabled people are often challenging. We rightly work hard to try to meet those challenges, and many disabled people say that we do not work hard enough. But the main reason I called for this debate today was to focus on the positives. Over the past 50 years, there has been an enormous improvement in the public’s attitude to disabled people, public understanding of their disability, and provision for their needs.
Sir Bert Massie repeated a story of being told in a restaurant, “I’m sorry, we don’t serve wheelchairs”, only for him to reply, “That’s okay: I don’t eat them”. That would not happen today, and that is something to celebrate, but, as we have seen those improvements over the past 50 years, we should now be optimistic that for the next 50 years we will promise even more.
A charity’s main aim should be to shut itself down. It should strive to achieve its mission, fulfil its special purpose and find that there is no reason for it to exist any more—but this is rare, if not unknown. The perhaps mythical charity for the relief of the destitute of Beverly Hills might have been such an example.
In this House, and in politics generally, there are quite enough problems to keep us busy, and so often the important gives way to the urgent. Setting a date of 50 years hence for this debate, we can start to think about the important. It gives us the opportunity to talk about a tantalising time when many of the urgent problems have retreated, in the hope that that might reveal the important ones left exposed on the beach of debate.
One charity that considered the possibility of being redundant was RADAR, when it was run by the late Sir Bert Massie, whose enjoyable autobiography was recently published. I am told that RADAR produced an annual report for 2030 looking forward in that way. Sir Bert imagined a world in which disability discrimination no longer existed—indeed, when no discrimination on spurious grounds existed. But the original idea for this debate was sparked when I discussed housing matters with a fine social housing provider called Habinteg, known to many of us in this House. It should be congratulated on its 50th anniversary, but did it imagine what the world would be like now when it started? I am not sure that there were many disabled Members of this House 50 years ago, and public transport was wholly inaccessible. Life is better now—still bad for many people, no doubt, but also better for very many.
Many noble Lords present will—but I personally shall not—see the world in 50 years’ time, when I would be approaching 115, but what will be the nature of disability then? Average longevity has been growing for years, so perhaps a life expectancy of 120 will be ordinary. We can hope to see ways of looking after the elderly improve, but perhaps the frailty that so often comes with age will grow further. Will dementia be preventable by then? Research is certainly progressing well, and there may turn out to be an infectious agent of some sort that can be prevented, just as we have discovered that many cancers are started by viruses.
My Lords, it is a pleasure to congratulate the noble Lord, Lord Borwick, on securing this debate and also on an excellent speech, which I am glad to follow. When we speak about minorities, we all too often lose sight of the fact that disabled people are the largest minority group in our country. Out of the UK population of 66 million there are, according to the charity Scope and the Family Resources Survey, 13.9 million disabled people. Despite that, disability discrimination is still considered by the public, the media and in some cases the Government to rank below racial, homophobic and religious discrimination.
Your Lordships’ House has led the way in championing the needs of disabled people, and we can see evidence of that in the speakers’ list for this debate. It was a privilege to be asked to serve on the Select Committee on the Equality Act 2010 and Disability under the excellent chairmanship of the noble Baroness, Lady Deech, in the 2015-16 Session. Many of the issues that I suspect will be raised in the debate today were covered by that Select Committee inquiry, and I would gently suggest to the Minister that it would be helpful if she and her department were to go through the 55 recommendations made in that report and see how many of them still need to be implemented.
I should at this point declare my interest as a vice-president of the charity Level Playing Field. I have been involved with the charity for 12 of the 20-plus years that it has been campaigning for improvements in access to sports stadia for disabled supporters. The charity gave me tremendous support when I took a Private Member’s Bill, the Accessible Sports Grounds Bill, through this House in 2015. Virtually everyone who spoke in its Second Reading debate was strongly supportive, particularly of the principle that each stadium should follow accessible guidelines and improve the experience for disabled people attending matches. As is the fate, sadly, of almost every Private Member’s Bill that starts life in this House, mine made no progress in the other place—but there seems to be little doubt that the pressure put on the football authorities by your Lordships helped to secure a remarkable change of approach. Access is now high on the agenda for clubs and sports governing bodies, and clubs have a clearer understanding of what they need to achieve.
My Lords, when it comes to disability, the first thing that strikes me is how incredibly wide the field is. There is a grave danger that when we talk about disability we start to talk about a bit of it. I am afraid that virtually all the lobby groups—although it does not happen so much in this Chamber—tell you that their particular problem is the worst. They say, “You don’t understand. The problems are so great”, usually when you are talking about someone you are helping and supporting in that group.
We have achieved things in this field. I have been here so long that I can remember the initial Disability Discrimination Act. It was one of the first Bills that I was allowed to take a leading part in, if noble Lords know what I mean. Then, the whole of the lobby spoke with one voice. We must try to get back to that. The way we do that is to accept the themes that run across. One is the need for independence and to be involved in the whole of society. With the modern world and technology, that is getting easier. It is at least technically possible that it will become easier all the time. That is where we should look.
However, the problem is how we facilitate that potentiality, because many parts of the system at the moment seem to be designed to make that as problematic as possible. Now might be a good time to remind the House of my declared interests as president of the British Dyslexia Association and chairman of Microlink, which deals with this for a fee—my card will be available to anyone who wishes to speak to me later on.
Yesterday, in the first Question of the day, I asked whether we could accept one form of identification for dyslexics, who are one of the biggest disability groups although not the biggest, throughout the whole education system. We discovered that we had decided to have two forms of identification, one before you are 16—it used to be 18—and one afterwards because the lifetime condition would change. People did not understand that the way you cope with these conditions might change, but the condition itself does not change. It is there. That is true of all the neuro-diverse conditions. There is a lack of understanding. The two parts of the education system were incapable of speaking to each other. They had to be dragged to have their heads banged together. I thank Ministers again for helping me in that process. We must make sure that we co-ordinate. All the potential advantages will be stifled if we do not.
My Lords, I congratulate my noble friend Lord Borwick on bringing this very important debate to the Chamber today. I am very pleased to follow the noble Lord, Lord Addington. The point that he made about the breadth of disability is very important because, for many people born with a disability, it will impact on them for their whole life. People might become disabled due to disease or accident, and then there is the frailty of old age. We must not forget parity of esteem and make sure that we recognise mental health and cognitive impairments, which sometimes also link to a physical disability. Therefore, it is a broad spectrum.
I welcome the prospect of what artificial intelligence will bring to that very wide and diverse group. Medical genetics, biopharmaceuticals and personalised healthcare offer us all—particularly those in the disability group—an opportunity for increased support and, in some cases, even a cure. But we should not focus only on machines and technology; as has already been mentioned, people are involved in caring for other people with a disability. We must make sure that people are at the forefront: people who are properly trained, who understand the nature of the disability, and—if I may say so—who are rewarded in an appropriate way for the important work that they do.
I want to talk about money—I know it is vulgar but I will do it, even in the House of Lords—and by that I mean money from the Government and money that people contribute personally to disability care costs. I shall speak first about money from the Government. Yesterday, the Alzheimer’s Society, of which I must declare I am a vice-president, announced that it believed the Government should provide a dementia fund for people with a diagnosis of dementia. People living with dementia face higher charges for care than those with other conditions, many of which allow for free care on the NHS. This is due to a lack of social care funding.
No one should face increased costs from developing dementia. Through the Green Paper on social care, which we are yet to see, the Government must ensure that people with dementia no longer face a disproportionate financial responsibility just because of the condition that they have developed. It is a disease. There are 850,000 people living with dementia in the UK, and that figure is expected to rise to more than a million within the next two years. The progression is rapid. The system of support for people living with dementia is unfair, unsustainable and in need of a long-term overhaul to ensure that they receive affordable, high-quality and appropriate care. Despite living with a health condition just like people with cancer or diabetes, people with dementia get most of their support from the social care system and do not receive most of it free at the point of use.
My Lords, I too congratulate the noble Lord, Lord Borwick, on knitting together two very different issues: the here-and-now problems that disabled people have in their everyday lives and the potential for improved treatment and outcomes in the next 50 years.
If we look back 50 years, there are many life-enhancing technologies that were not available then, such as hip and knee replacements, voice-activated software and computers themselves, while disabled access to many public buildings was impossible, with few accessible toilets. I do not think that the terms “autism” and “dyslexia”, both of which we have heard about this morning, were as well recognised then as now, and mental health problems were often hidden. In Britain, 22% are reckoned to live with a disability—or 19% of working-age people—meaning, in UN terms, that they have poorer health, lower educational attainment, fewer economic opportunities and higher rates of poverty.
It is refreshing to be asked to consider what the future for disabled people might look like in 50 years’ time, although we should not get carried away with thinking that today’s problems will have melted away. In the medical field, there will undoubtedly be all kinds of exciting breakthroughs—such as, for example, the amazing technology, now in its infancy, that allows some people with spinal cord injuries to begin to learn to walk again. We also hear that artificial intelligence can help blind people and PowerPoint can help deaf people.
However, it will probably be all the things that help disabled people to live independently that will make the most difference to the greatest number. That means not living in residential care but having help to get out and about; to work, if necessary; or just to live a normal life. Yes, there will definitely be sophisticated electronic devices to help with this, and in 50 years’ time perhaps everyone will have some form of smart home technology. But are smart devices really going to supplant personal assistants or carers? A great number of disabled people in 50 years’ time will be very elderly, like the noble Lord, Lord Borwick, will be. I cannot see technology being the sole answer for them, as he said. I hope the Department of Health and Social Care has factored this into its calculations.
I thank the noble Lord, Lord Borwick, for tabling this debate today. He has been a great friend of disabled people, championing developments in housing, transport and deaf children’s inclusion in education. I am also glad that he mentioned Bert Massie, an exceptional disabled person whom I had the pleasure of working with from when I was about 22. We worked together on the Disability Rights Commission. That body probably drove some of the best changes in disability equality that this country has seen. He mourned its closure, as I do. He was a disabled person, he worked with disabled people and together we were able to ensure that the Disability Discrimination Act was implemented. Things are going a bit cold now.
This House has a long history of working with disabled people and furthering our causes. Great pioneers, such as the late Baroness Felicity Lane-Fox, Lord Ashley, Lord Morris, Lord Rix and Baroness Darcy de Knayth, are but a few. We have gone from being hidden away and cared for by charities, to being citizens with equal rights enshrined in legislation, within a matter of 50 years.
With the passing of the Disability Discrimination Act, the advent of social care direct payments and a number of entitlements such as disabled facilities grants for home adaptations and disability living allowance—now PIP—our ability to live independently, for many but not all, became a reality. The package, taken together, enabled greater inclusion in the community as active and not dependent citizens.
Our case for a more integrated and joined-up response to our needs, with the emphasis on self-determination, is what disabled people call independent living. This is about living—living a life, as we all do today. This important principle has been largely accepted but not yet fully realised. In probably the last 12 years, there has been a notable slowdown in progress. Independent living is not just about social care. It is not about living on your own or doing things for yourself. It is about having choice and control over whatever support we need to go about our daily lives—working, socialising, raising our families and so on. It means, as the UN Convention on the Rights of Persons with Disabilities says,
My Lords, it is a pleasure to take part in today’s debate and I congratulate my noble friend Lord Borwick on having such a visionary title for it. Few people have done as much as he has on access to transport, not least when it comes to London’s licensed taxis. We should all be incredibly thoughtful on that point when others seek to let new entrants into the taxi market. That same level of access should absolutely be guaranteed before they are given a licence in this city. I must, however, pull up my noble friend on his most pessimistic point. I have no doubt that he will celebrate his 115th birthday. I look forward to celebrating it with him, when I will be a mere child of 97.
There is much I would have liked to cover in today’s debate—education, employment, social inclusion and everything around the fourth industrial revolution, not least artificial intelligence—but I will limit myself mainly to the issue of public appointments. Outside your Lordships’ House, who even knows what a public appointment is? Yet there are more than 6,000 public appointments to 500-plus public bodies responsible for the governance of over £200 billion of public expenditure. For that reason and many more, I was delighted to accept an invitation from my right honourable friend the Minister for Implementation, Oliver Dowden, a year ago, to lead a review into public appointments in the United Kingdom, not least what was happening for disabled people.
There are 6,000-plus public appointments. Currently, 3% are held by disabled people. That is around 180 public appointments. When compared to the overall figure, perhaps we should consider them public disappointments. People fortunate enough to hold public appointments often hold a number of them, which actually means that fewer than 180 disabled people exercise those most important functions in our society. I wanted to look at the reasons that so few disabled people came forward, even fewer were appointed and why we knew so little about the disability status of all people applying for public appointments.
My Lords, I, too, thank the noble Lord, Lord Borwick, for tabling this debate—I have to say, he made me smile. Unfortunately, some of the discrimination that I still experience these days is people wafting a hand in my direction and telling me that people like me cannot do lots of things. I hope that I am able to channel the spirit of the much-missed Sir Bert Massie in saying that my response to that is always, “What? You mean Welsh people can’t do those things? Oh, sorry, you mean the disabled?”
I understand that the Minister might not be able to answer all my questions today because my contribution will cover a wide variety of areas, from physical activity to wheelchair provision and public transport, but the issues and solutions for disabled people show that they do not fit into just one government department; we are not just one homogenous group.
I declare an interest in that I am chair of ukactive and of the national Wheelchair Leadership Alliance. As I hope most of my noble friends will be able to attest, having the right wheelchair is crucial to living an independent life. Having the wrong chair or the wrong cushion can be disastrous. A pressure sore alone can cost the National Health Service £150,000 to heal. While I am delighted that in their response to the consultation on their 10-year plan the Government have committed to creating a legal right to a personalised wheelchair budget, there is still much that we need to do. I hope that the Minister will be able to reiterate that commitment. Within this work there is an amazing opportunity to create greater alignment of health and social care support for disabled people through integrated personal budgets and applying the comprehensive model for personalised care. Providing the right chair is a complicated issue of tariffs and access. This is not just about creating significant savings but, if we get it right, radically improving the health and lives of disabled people.
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Level Playing Field tells me that the Premier League pledge has resulted in the biggest change in facilities for disabled fans since the league was founded in 1992. Of its 20 members, 17 now meet the accessible stadia guidelines for wheelchair user spaces, and over 1,000 more spaces have been provided across the Premier League since the pledge was signed. There have also been 16 changing places and 10 sensory rooms created. All Premier League clubs have identified easy access and amenity seats, and more disabled away fans can now sit alongside their fellow supporters.
As recently as 2016, after the publication of the Select Committee report, I was still very critical of the lack of progress. While there is still a lot more to be achieved in the Premier League—including ticketing processes, sight-lines, persistent standing, appropriate audio-descriptive commentary and away-match experiences —I am pleased to acknowledge how much the situation has got better. I commend six clubs in particular where the pledge has led to really significant improvements: Everton, Chelsea, Watford, Newcastle United and our two proud competitors in the European Champions League final, Liverpool and Tottenham Hotspur. They all meet the accessible stadia guidelines.
The English Premier League pledge has also had a beneficial effect on the Football League. Championship clubs now have two years following promotion to meet the accessible stadia guidelines. Some good work is being done in Leagues One and Two and lower down, but there are inconsistencies that need to be addressed. The same applies to sports such as rugby, cricket, tennis and horseracing, which are following the Premier League’s example in assessing their own facilities and making improvements.
While these advances are very welcome, there is an overriding need to create a more inclusive culture in society as a whole, so that disabled fans enjoy a genuinely equal experience. We shall therefore need clear legislation, such as my proposed Private Member’s Bill, that binds sports clubs by the accessible stadia guidelines as part of their licence. There also needs to be an appropriate governing body to oversee and manage these arrangements.
Looking more widely, we should review the disposable income of disabled people. Scope estimates that on average there are additional costs of £583 per month to being disabled. Looking ahead, we can anticipate that during the next 50 years there should be technology improvements, increased life expectancy and more leisure time, as the noble Lord, Lord Borwick, has described to us. Disabled people are entitled to expect improvements to public transport links, including equal access for wheelchair users travelling on trains and buses and in taxis.
I also hope there will be better understanding of hidden disabilities, including mental health, learning disabilities and dementia. These will need more public awareness and better staff and service provider training and information. We shall need to recognise that an ageing population will mean an increased demand on existing facilities.
Finally, I will say a word about one of the most unpleasant aspects of the debate on disabled people. I refer to the growing incidence of abuse and discrimination. In the past 12 months, reported incidents of hate crime have increased in the UK by 33%. According to police figures there were 5,342 reported cases in 2017-18, compared to 4,005 in 2016-17. There is evidence of significant underreporting of cases. Many sports fans, for example, do not report what they see or experience due to fear, uncertainty and not having confidence in anything eventually being done about such incidents. That needs to be tackled by proper information-sharing arrangements, centralised data sharing, focused research, measuring change, and players and fans speaking out and not tolerating this.
There is a lack of consistent messages about what to do in a situation where a hate crime arises, and there has to be united and consistent action that makes it clear that any form of discrimination is not tolerated. I would like to see a charter to which everyone involved signs up—sports governing bodies, supporters’ groups, clubs, charities and the Government. In some cases, the constitution of fan groups will need to be amended to make it clear that discrimination against disabled people will not be tolerated. That needs to apply equally to social media and online forums and to written constitutions and rulebooks. If something is not acceptable on the street, it is not acceptable online either.
Passporting of identification and problems would help in virtually every field. There is a diagnosis, it is carried through, and that is how we deal with it. There is identification at school, then the disabled students’ allowance, through to access to work; I have looked at that path myself. How do you make sure that one diagnosis says that you go through? People will be able to give examples of this in other fields but, unless you carry it through seamlessly, you will have problems.
Why does that matter? If you want to make somebody economically active and be of benefit to society, you make sure that they have the opportunity to gain an education, qualifications and a job so that they can function in the outside world. There is a question over whether we should let people bear some of the extra costs, which have already been mentioned, but the state should help at certain points. There might be agreement that there should be some assistance from the state but, if the person is employed in their own right, the level of burden falls.
The noble Lord spoke about isolation. If you happen to be in work when you are diagnosed with a disability, one of your major social interaction points is removed, at least to an extent. However, if somebody at the workplace sees that the person with a certain physical condition or disability can function, suddenly a barrier is removed. It is about getting the person into that situation. One of the greatest lessons I have learned is that you encourage that to happen by making sure that it is as easy as possible to provide assistance.
We have discovered that slightly changing a line manager’s budget is one of the greatest barriers to making sure that the right assistance is provided in the workplace for a person identified as disabled. That is often the case with a late-onset disability. Someone might say to their employer that they have rheumatoid arthritis and will need a new chair and a new keyboard. The employer asks, “How much will that cost? Wait a minute. I want to paint the office and upgrade the entire computer system. How am I going to get the money for that?” If the assistance comes from elsewhere, things will happen quickly. The employer will then find that they do not have to deal with somebody, possibly with mental health problems, who turns up late, and they will not have to face legal fees for constructive dismissal and so on. Things become easier and quicker if there is identification and you are told that there is a comparatively straightforward way of dealing with the problem. All disability groups will benefit if we encourage government to do that.
One major barrier arises if people say, “That’s not what we do and that doesn’t concern me”. That happens largely because many people—usually those with the less obvious forms of these conditions—never identify themselves and carry on underachieving, not getting promoted and hiding in corners. We have to embrace the difficulties and try to get the potential out of this group. A great deal of time, energy and money can be saved by doing that, and the lives of the people in those groups who are around you will be improved.
The Government should take on board that people should be encouraged to self-identify, and it should be communicated to them that any problems they have can easily be solved or at least mitigated. That is what I would encourage the Government to do. Looking 50 years into the future, if we properly implement the solutions and take the practical steps that we have identified now, a great many of these problems will, if not disappear, at least become rather more manageable.
According to research by the Alzheimer’s Society, people with dementia typically pay £100,000 in care costs, with 15% to 20% higher costs than people without a complex condition, and in some cases more. There were 70,000 avoidable hospital admissions of people with dementia in 2016-17; this represents an increase of 70% in the last five years. Although the Alzheimer’s Society is looking to the Government to provide a dementia fund, noble Lords can therefore see that adequate provision would create savings throughout the health and social care system. Training for those in adult social care who interact with people with dementia is also really not up to par; it is not up to tier 2 of the dementia training standards framework. I hope that will be addressed when we eventually see the Green Paper.
Dementia costs the UK economy £26.3 billion per year, an average of £32,250 per person; that is enough to pay the energy bills of every household in the country for a year. But the people affected by dementia shoulder over £17 billion of care costs—an extraordinary amount that represents two-thirds of the total costs. It would take someone around 125 years to save for their dementia care costs if they saved at the same rate as for their pension. There is a need for the Government to consider very seriously this request from the Alzheimer’s Society for a dementia fund that will assist with increased training and the financial costs that the public bear.
The other area I want to touch on is money and the individual. All Governments, of all persuasions, in recent years have failed to take the opportunity that the tax system could offer to those with dependants who have a disability.
We can talk about many issues here. I declare an interest as a vice-president of the National Autistic Society, and I have raised the subject of autism on the Floor of both Houses for many years. I have a very personal family interest in the subject. Regarding autism or any other disability, we spend a lot of time talking about education, social care and getting into employment, all of which are incredibly important, but when you talk to parents of a child with a lifelong disability you find that the one thing that haunts them is, “What happens to that child when I am no longer here?” It does not matter if the child is four or 40.
There are parents around the country whose children, including adult children, have many different disabilities, and they would quite willingly make provision for their child in their own lifetime, to make sure that that child or dependant was able to survive to a more suitable standard of living and in a more sustained way when their parents were gone. Yet we have inheritance tax rules in this country which have said for decades that under the lifetime gifts rules you can gift only £3,000 per year, and even if you are able to make a substantial gift to a child to make provision for them for later on, you have the difficulty of the seven-year rule. I know there are trusts. I have looked at trusts; I have spent a lifetime studying them, and I have to say that solicitors do very well out of them. I will say no more than that. Sorry, I am looking at one or two lawyers around the Chamber. Some are nodding. How very honest of them.
When the Government look at inheritance tax and taxation generally, could they please look at people with responsibilities for disability? Can we not change the rules so that such people are not penalised, but are able to take the opportunity to use money that they themselves have earned to make provision? Many of them are very willing to do so.
I join with others in saying that it is shocking that we have not yet seen the Government’s plans for social care, which are so urgently needed. Unless some serious training and recruitment is done, there will not be nearly enough care workers to cope with the growing demand for home care, particularly if Brexit goes ahead. How care is paid for is, of course, the burning question that must be tackled, as is sorting out the fuzzy and unsatisfactory boundary between NHS continuing care and social care.
But before I leave the world of assistive technology in the home, I hope in time that it can be harnessed to enable far more disabled people to be employed. I hope it is something that work coaches at the Department for Work and Pensions are exploring right now. Far more attention also needs to be paid straightaway to the provision of both accessible and adaptable homes, and wheelchair accessible homes, which are needed now as well as in the years to come. That is something that the noble Lord, Lord Borwick, touched on when he praised Habinteg, the housing association for disabled people. As for transport, perhaps we will all be riding in driverless cars in 50 years, although I find that a terrifying thought. “Who will help us in and out?”, I wonder.
So what would make a difference to disabled people’s lives going forward? I envisage a world where there are more hydrotherapy pools for those with limited mobility—I hope that the noble Lord, Lord Luce, will touch on this when he speaks; where wheelchairs and scooters have long-life batteries for travelling good distances; where most restaurants, cafés and shops are accessible; and where a lot of good hotels, far more than now, have electronic beds and hoists. Surely these things could be available in far less than 50 years.
Also by then, we should have far more disabled people not just in employment but in positions of power and influence as local councillors, school governors, mayors, CEOs, MPs, Peers, judges and, yes, government Ministers. I know that the noble Lord, Lord Holmes, is on the case. We again heard about that today at Questions. Let us mandate all local authorities to have an access officer who has a disability.
To sum up, society must be eternally vigilant over the needs of disabled people; otherwise, we risk the clock going backwards, however good the technology. Being disabled is very expensive and probably always will be. In 50 years’ time, life may well be better for all disabled people, but only if those in positions of leadership always involve disabled people themselves in what they really need and what really works for them.
“the equal right … to live in the community, with choices equal to others”.
Independent living aspirations rely on an integrated support framework and the removal of barriers in all aspects of our lives. Remove or reduce one aspect of support, and independent living becomes more expensive, dependent living. It is probably 13 years since the UK adopted the promotion of independent living as an official policy and committed to developing a system of integrated support. However, due to a combination of austerity measures, the closure of the Independent Living Fund, changes to disability living allowance as it migrated to PIP and a lack of progress in the realisation of the UN Convention on the Rights of Persons with Disabilities, progress has ground nearly to a halt in this area and, in some aspects, is regressing rapidly.
What must be done? In thinking about this debate, I asked the noble Lord, Lord Borwick, what he was hoping to hear from our contributions. He encouraged me to think big. So, here I go. If I were Prime Minister tomorrow, I would look to develop radically disabled people’s current ideas of what it would take to be independent, as articulated in the life chances report and in Article 19 of the UN CRPD. A friend of mine suggested an excellent term for such an enterprise: “a comprehensive access to living scheme”. That sums up the kind of integrated, wraparound support required to support living a full life. This would replace our current support provision, which divides disabled people up into unwieldy boxes of social care, continuing healthcare, housing or employment support.
To do this, the Government would, first, develop a national access to living fund, which would bring together all the current state-funded work streams earmarked for our various support needs. Secondly, the Government would reinvest in the regional networks of crucial peer support as currently practised by user-led organisations such as the centres for independent living, and seed-fund new ventures in the form of co-ops, social enterprises, community businesses and other charities. This would enable a hundred flowers to blossom, making for a strong access to living culture, and enabling all disabled people—all, no matter what their medical condition—to maximise their life chances. An access to living investment would foster the transformative social capital we have yet failed to realise under current outdated systems, which, in social care support alone, now offer only the top-down, survival safety-net services.
I therefore invite the Minister to start by meeting the disabled people who have been thinking about this new idea. The national Independent Living Strategy Group, which I chair, is a disabled people-led think tank, set up especially to look at progressing independent living. It is working on this and another very important proposal, which is for an access to living programme of action: namely, to amend current legislation to deliver a new free-standing Bill to achieve this joined-up vision. The Independent Living Strategy Group has already looked at what the incorporation into British law of Article 19 might look like, and we would like to share our thinking with the Government on this.
However, this cannot be done without disabled people. Unfortunately, this Government have not been very good at working with disabled people. I remember the 1990s, when we worked with Ministers and experts in the Civil Service practically weekly; now, you would be lucky to get a meeting once every three months. That has to stop. We need to work together—I mean truly together—because it is high time that disabled people’s right to social inclusion was a reality and not a dream.
Giving an inclusive and accessible approach to applying for a public appointment is not seeking to give a disabled person an advantage or a leg-up; it is merely enabling disabled people to apply with fairness, dignity and respect. Allowing alternative means to apply for that public appointment is not giving a neurodiverse person an unfair advantage. It may be the difference between them being able and unable to apply for a public appointment at all.
I will share some of the recommendations of my review, not least because my intention in doing the review was that these would be specific to public appointments but would have wider application across all areas of public, private and third-sector life. First, to set a target, 11.3% of all public appointments should be held by disabled people by 2022, with a review held this summer. I do not believe that 11.3% should be a ceiling, but an interim target. It reflects the current target for disabled participation in the senior Civil Service. I ask my noble friend the Minister whether she agrees with that target of 11.3% and what progress is being made towards it. By 2022, I believe we should be well set to go beyond that target.
I wanted the whole review to be focused through the lens of talent, because that is ultimately what we are talking about—the golden thread that runs through all our lives. When it comes to attracting disabled talent, role models are critical. I have already said that less than 3% of public appointees are disabled people. That means that the number of role models is small but incredibly important.
The Government should undertake a serious mentoring programme for all diverse potential applicants for public appointments. They should look at the multipliers, connectors and conduits; at all the channels of the excellent organisations of and for disabled people; and, equally, at organisations across our society. If, for example, the Ministry of Justice was looking to have a disabled person on one of the legal boards, it should look to legal publications, the Law Society, et cetera—to go broad and deep on this. Innovation should be at the heart of everything we do. Why can one apply only with a relatively inaccessible application form and, irony of ironies, a pretty inaccessible monitoring form? We should do stuff differently; if we do not, how can we expect to achieve different results? Why have interviews? Why not have mock boards or shadowing? Think wide, think broad, think innovation. If we want public bodies which truly reflect and represent our fabulous, bright, beautiful and diverse Great Britain, we need to go about this differently.
Ultimately, we are talking about change. Change is not easy, but it is essential. When I was lucky enough to lead Channel 4’s Year of Disability in 2016, not only was I incredibly fortunate to lead a group of people called the Year of Disability advisers—which meant that I was the chairman of YODA—but we were able to put in place many positive impacts both for broader society and for the channel. As noble Lords have mentioned, we need people to identify as disabled people. We were able within seven months though specific, targeted interventions to take the level of our people at Channel 4 self-identifying as disabled from 3% to more than 11.5%. Change is difficult, but it does not need to take a generation.
To take us to the big level—the next 50 years—heading not only towards my noble friend’s big, fabulous birthday party, what do we need to see? Many years before that point, I would hope to see a complete elimination of the attainment gap for disabled people in education. I would want equality of opportunity and representation in all areas of employment and in every aspect of our public life.
As I have already said, it is pretty simple if we take it down to the question of talent. We need government, civil servants, private sector, public sector—all of us—to look harder and further for that talent, not least that held in all the fabulous disabled people up and down the country who, sadly, all too often do not get the opportunities. Ultimately, our business needs to be about this, addressing the fundamental issue that still blights our society. Talent is everywhere; currently, opportunity is not.
We know that everybody benefits from having more physical activity in their life. The Alzheimer’s Society has recently produced an amazing guide to show what those with Alzheimer’s can do and how they can benefit. Activity Alliance recently published research showing that a significant number of disabled people have concerns about being physically active in case it affects their support and benefits. Everyone Can is a project, commissioned by Sport England in 2017, which aims to encourage more disabled people to be physically active by identifying and addressing a number of specific barriers encountered when using gym and leisure facilities. Slightly worryingly, Sport England’s 2017-18 Active Lives survey found that 42% of disabled people and those with long-term health conditions were inactive. This is double the rate of those without disability or impairment.
We have to turn physical activity into a reality for disabled people, so ukactive has been working alongside disability organisations, such as Activity Alliance, Disability Rights UK and Sense, to identify the common barriers and a range of potential solutions which could be piloted and rolled out in the next two phases. This has included consultation with disabled people, disability experts, advocacy organisations and leisure operators. In phase 2, interventions will be piloted across a select number of sites and will be underpinned by rigorous assessment and evaluation. They will look at a consistent data standard, how we make changes to the physical environment, and staff training and workforce development, encompassing technical and communication skills. We have to create a more joined-up stakeholder community that highlights the importance of physical activity among disabled people and signposts them to appropriate local provision. To combat the fear of being physically active, we have to look at the personal independence payment structure and how assessments are carried out to make sure that people who are being active do not have their benefits removed and that being active is not seen as a negative thing. It can only be positive if disabled people are able to be active.
I turn to public transport. There is still a lot of discrimination if disabled people want to travel by plane. The noble Baroness, Lady Vere, has offered me a meeting. The ball is firmly in my court to take her up on that. I take more than 100 train journeys a year and I was recently asked what I wanted for disabled people. It is really simple: I want the same miserable experience of commuting as everybody else. Sadly, we are not there. Luckily we do not have to travel in the guard’s van any more but—this is slightly tongue in cheek—at least then we had a chance of getting on and off trains. I apologise to anyone who follows me on social media for the amount that I post about trains, but it is to show the challenges that many disabled people face every single day. There was no accessible toilet on the train that I used on Monday to come to London to be in this Chamber. I knew about it before I got on the train, but in this day and age it surely cannot be acceptable for trains to run with no accessible toilets. The booking system needs a lot of work. I have had many positive interactions with Network Rail and the train operating companies. To be fair, they did not realise the size and scale of the issues that we have to deal with, but the Government can also do more.
In recent days, FirstGroup confirmed to a colleague of mine that there will be only two spaces on the new London to Edinburgh service that comes into effect in 2021. The new Caledonian Sleeper has no accessible shower on board. I am looking forward to a time when I book such a journey and push through the station in my pyjamas looking for an accessible shower that may or may not be in the station. I am not sure that anyone is ready for that. The accessible twin rooms on that sleeper do not have any access to the lounge, so disabled passengers will be very isolated in the room that they book. It is not currently possible to book online. What about people who are deaf or have multiple impairments? At the moment, the only way to book is by phone: this is not accessible. I have not yet written to the operators of the Caledonian Sleeper; I will be making contact this week. It has recognised that it has to do more. I found out this morning that GWR’s sleeper service has designated space in a room with wheelchair access but, again, no access to the lounge. It provides room service or at-seat service, but limits the way that a disabled person can move around the carriage.
The new Azuma trains that have come on line with LNER have had a mixed response. I was offered an opportunity to go and look at one. I was not able to take up that particular date, but I shall go and look at it in the next couple of weeks. I heard this morning that the wheelchair seats have no windows and are isolated at the front and back, which does not always provide easy access for people. There are examples of good practice. Abellio is apparently very good at consulting disabled people, but other train operating companies in the network have to continue that good practice.
Finally, I ask Her Majesty’s Government not only to support co-production and consultation with disabled people—it is a travesty that train operating companies are not consulting disabled people on these issues—but to look at the design regulations again to ensure the best outcome for disabled people, so that we can have the same miserable experience as everybody else.
Will we have solved some of the other problems of extreme old age? In every generation, people have felt that technology has passed them by, whether that be transport or iPhones. The older generations can now handle—just—the mystery of computers, but it has always been the case, and probably always will be to some extent, that technology will leave some of the older generation behind. It means that there are so many people alive today who are isolated by technology—who, for instance, cannot handle a ticketing system that is online only or that restricts cheaper tickets to online only.
Isolation makes people miserable. It may be one of the big challenges of the future. We should always be grateful to be Members of this great House, because so many deserving people do not have our privilege of having friends to disagree with. Perhaps, when our successors are debating the installation not of 5G but of 50G, they will convince the teenage designers of that system to design it with older people in mind. Better communication should reduce loneliness, but does technology always achieve this? I can hope only that the sheer numbers of older people will mean that that demographic group is a commercial opportunity.
Many scientists believe that, were people to engage in a healthy lifestyle throughout their lives, they could live for well over 100 years in relatively good shape, with preservation of cognitive ability. In a book entitled The Blue Zones, Dan Buettner studies communities around the world where people frequently live past 100. They stay physically active, eat well and usually never smoke—not even on the terrace. Crucially, they also enjoy loving, purposeful relationships throughout their lifespan. Someone can be physically well but lonely; loneliness clearly increases the loss of cognitive function and accelerates costly, preventable decline.
Technology can isolate people, but it also has enormous potential to alleviate loneliness. For instance, we can be sure that autonomous cars will be routine in the next few years. That could mean much more independence for those who are currently dependent—but when will we see autonomous ambulances with perhaps only one nurse to look after the patient while the ambulance drives itself? Autonomous cars may enable those with learning difficulties to travel as easily as everyone else, but what will happen without the contact with other people that happens on a bus? Will buses find themselves priced out of existence? Perhaps the autonomous taxi will be just a haven from increased crime.
Again, looking 50 years ahead means that we can start to identify the important things that we hope will not become urgent, because we know that a lot of costs are associated with disability. Lifts, special bathrooms and automatic door-openers are all expensive and all need electricity and maintenance. Whether they will get proportionately cheaper in 50 years’ time is an open question, but what is certain is that extra costs will exist, and I hope that all parties will accept paying towards them.
The subject of human helpers employed by many disabled people is more complex. With the growth of free trade—and, I hope, free immigration—around the world, I would expect the average wage of unskilled people to converge, so it will not necessarily be advantageous for British disabled people to employ foreign helpers. Will we see robots help instead? We see this already in places such as Japan, which has low levels of immigration.
One thing is predictable: in 50 years’ time, the promised Green Paper will actually have been published, and at least 50% of houses will have already been built to the lifetime homes standard. That is because the Government will have accepted the recommendation from all sides of the House to make it mandatory. That the majority of all houses should be accessible seems easy to me. We are winning the argument; I believe that building accessible housing will be seen as helpful not only in a practical sense but in an economic sense too. Given the number of times a house will change hands over the course of its existence, there is a good chance that a resident over that timeframe will need wider doors or accessible plug sockets. Building those things in at the start will be more economical than making alterations over a number of years.
Technology in healthcare can help, too. A few years ago, the American company Theranos popularised the idea—albeit perhaps fraudulently—that it should be possible for every patient to take a small drop of blood by themselves, which should reveal all the health markers that are so hard to find now. It is likely that another company might produce this in the future, meaning that every person could monitor their health daily with complete accuracy at trivial cost. All infections and diseases will be caught early, probably leading to much less suffering. Such technology might also, almost unbelievably, reduce the cost of our National Health Service. For those with disabilities, being able to track other health issues easily and cheaply will be of enormous benefit.
State borders will not be limitations on these benefits. For medicine in resource-limited countries, telecom-munication and telemedicine will be very helpful. It is happening today. Pathology reports and X-ray images can be sent to experts, and we can get second opinions through a group of physicians who volunteer to help in this effort. Surgeons can now operate remotely, thousands of miles away. So, looking forward, will it be easy for UK doctors to routinely treat patients in third-world countries, and will it be easy for doctors trained in South America to take on patients in the UK? How will we sort out prescriptions written in India and delivered in Westminster? Perhaps with prescriptions dispensed by Amazon—who knows? Treating conditions that might exist alongside a disability should be easier for those in the UK and overseas, which is a welcome prospect. Again, having a 50-year perspective is a useful framework for working out what issues might be important, so that we can start to use technology to tackle them.
I have addressed how technology can be used for good, but I have also acknowledged that it can isolate people. I think that loneliness might be the biggest long-term challenge for improving the lives of disabled people. The Government have, to their immense credit, recognised the problems that loneliness can cause. They have even given a ministerial role to the task, which my honourable friend Mims Davies MP currently occupies. The Government’s loneliness strategy was launched in October last year, and there is much to recommend in it. The strategy recognises the potential that technology has to reduce loneliness as opposed to exacerbating it, and it also seeks to discuss loneliness in classes at school so that children can learn about its impact.
While I welcome the Government’s willingness to tackle loneliness, it is also true that the best solution is the long-term care and support provided by families and loved ones. The Government can and should help when someone is truly alone, but they cannot and should not replace a family. There are thousands of family carers across the country, many of whom are balancing jobs and young families at the same time. This is a tremendous resource not just for the lonely person but for the country, and we should be immensely proud of these people. I have noticed an increase in award ceremonies and the like celebrating the role of family carers, and that is absolutely right. They are national heroes and may be the secret to making the next 50 years even better than the last.