Disabled People

Baroness Thomas of Winchester Excerpts

Thursday 28th June 2018 Lords Chamber

Moved by

[Baroness Thomas of Winchester]

To move that this House takes note of the different challenges facing disabled people in the United Kingdom in 2018.

[Baroness Thomas of Winchester (LD)]

My Lords, I begin by declaring that I receive DLA and that I have Pompe disease, a very rare form of muscular dystrophy. This is the first debate I can remember that is widely enough drawn to give speakers the freedom to bring any aspect of the challenges that disabled people face to the attention of the House. I particularly look forward to the maiden speech of the right reverend Prelate the Bishop of London.

For myself, I ask for understanding that I will have to leave so much out, but I hope that, one way or another, a lot of ground will be covered. What might be left out are a lot of hidden disabilities, which can cause so much misunderstanding. I asked my noble friend Lord Addington whether he thought severe dyslexia made him disabled. “Only when I try to write”, he said—a great answer that can be translated into many other settings. In the hidden category might come fluctuating autoimmune diseases such as lupus, heart problems or autism. People with severe mental health conditions might not see themselves as disabled, but if they and others can easily walk away from a blue badge space in a supermarket car park they will be labelled as frauds. No one with these conditions must be overlooked, particularly by ESA and PIP assessors, or, for that matter, by HR departments.

This year, we are celebrating 100 years since women first got the vote, but it was more than that. They were excluded from so much of public life that it is no wonder the suffragettes were so militant. Today, we take it for granted that women can rise to the top in any profession, but the same is not true of disabled people. It was only 23 years ago that the noble Baroness, Lady Campbell of Surbiton, whom we miss today very much, and others were disruptively demonstrating outside Parliament against the widespread discrimination of disabled people. That led to the Disability Discrimination Act 1995. They then had to demonstrate again some years later to establish the concept of independent living, now enshrined as Article 19 of the UN Convention on the Rights of Persons with Disabilities, which is of fundamental importance to the lives of many thousands of us and which is under grave threat now.

Just for the record, independent living does not mean living alone. Although its basic meaning is simply the opposite of living in a residential care home, it also means enabling disabled people to participate in all areas of life. The main reason it is under threat is, of course, the lack of adequate funding for social care and for NHS continuing care.

The Independent Living Fund was a government-funded discretionary scheme, set up in 1988, working alongside local authority schemes to help people with high support needs live in the community. It helped 23,500 of the most severely disabled people to live independently. In other words, it gave them choice and control over the support they needed to go about their daily lives, hopeful that the barriers to equal citizenship would be progressively removed. Then, the global financial system went into meltdown and the fund was closed to new members in 2010. It was finally closed in 2015, with responsibility and funding passed to local authorities to administer. Crucially, the money was not ring-fenced. Funding for social care has been cut by £7 billion since 2010.

Many recipients were cut back to receiving just enough to fill very basic personal care costs, with the shadow of the residential home looming once again. As one person put it to me, “If you are more or less confined within the four walls of your home, your ambitions are diminished to mere survival”. I met a young man of 22 with Duchenne muscular dystrophy when I was in hospital earlier this year. His care package had been scaled right back because of funding cuts. When he asked how he was supposed to manage without full-time personal assistance, he was asked, “Can’t your girlfriend help you?”.

I am not asking for the ILF to be reopened as it was, but I am asking for a guarantee from the Government that the whole concept of independent living will be reconfirmed and enabled to flourish and will not become a postcode lottery. There is no statutory right to independent living, and while the Government pay lip service to its core tenets of increased choice and control, there has been no co-ordinated action across government after support for the Disability Action Alliance was withdrawn two years ago. There is a huge amount of fear that those who have been thriving in their own homes with support might have to move into residential care, with most of their freedoms taken away. The vision of independent living that led to the direct-payments legislation of the 1990s, passed with all-party support and championed in this House by the noble Lord, Lord McColl of Dulwich, is rapidly disappearing. The well-being principle, embedded in the Care Act 2014, is being abandoned.

My main question, therefore, to the Minister is to ask whether the Government will heed the voices of so many disabled people who do not want their lives to go backwards but fear this will happen if independent living is not given a significant reboot. Scope has called for a cross-government strategy—a good idea, which I endorse. Disabled people have a myriad of different conditions, but there is one thing that knits us together, and that is that being disabled is very expensive. Research from Scope has found that on average disabled people face extra costs of £570 a month—sometimes, I fear, because they are not getting as much DLA or PIP as they need. I shall return to PIP later.

One of the most expensive problems many of us with mobility impairments have to face is adapting our homes. A means-tested disabled facilities grant might be available from the local authority. This is capped at £30,000, which sounds like a lot of money but does not go very far if a through-floor lift has to be installed, doors widened and a bathroom changed into a wet room. One family whose son has Duchenne muscular dystrophy had to pay £70,000 of their own savings and racked up £15,000 in credit card debts to adapt their home. They were simply not able to carry their child up and down stairs anymore as he got older.

It is only in the past few months that the Government have finally announced that they are activating—although we do not know when—that part of the Equality Act which gives leaseholders the right, at their own expense, to adapt the common parts of the building where they live. Perhaps the Minister could say when we can expect that to happen. Surely the DFG should rise in line with inflation, and local authorities should be encouraged to ensure that new developments have at least 10% of houses built to lifetime homes standards. In May, the EHRC published an 18-month survey showing that only 7% of housing in England meets accessibility standards; 365,000 people said that they were in unsuitable housing. Few local authorities across Britain set targets for accessible housing, although there is strong evidence that such housing saves on health and social care costs in the future.

I now turn to the Government’s ambitious plans to get 1 million more disabled people into work in the next 10 years. There appears to be a lot of work in progress, which I am sure the Minister will tell us about and which I welcome. Access to Work is a great, if underadvertised, scheme to help disabled people in the workplace. It would make a lot of difference if it could be extended to volunteers and interns, and even made portable. I cannot, however, help coming back to the whole picture. Will there be enough personal assistants or care workers, post Brexit, to assist many working-age disabled people to get ready for the working day? Is there enough accessible public transport that can accommodate more wheelchair and mobility scooter users?

Are there enough accessible workplaces with suitable toilets? The lack of accessible and suitable loos the length and breadth of this country is a disgrace. Even Jobcentre Plus offices do not have them. In November 2017, Muscular Dystrophy UK—on whose board I sit—took over as co-chair of the Changing Places consortium, which is responsible for the campaign for fully accessible Changing Places toilets with a bench and hoist. There are quite a lot of these, but not nearly enough. This comment from a frustrated parent says it all: “The lack of suitable toilets in the UK is the blight of our life and excludes our son Mylor from accessing and enjoying everyday activities most of us take for granted”. The building regulations need to be changed. At a minimum, surely these toilets should be mandatory in all large new-builds.

Before I end, I must come back to my old adversary, the PIP process—the main disability benefit. The payments are a lifeline for many disabled people, but the process could be working so much better. We are constantly told that more people than ever are getting PIP, but, in light of the huge number of successful appeals, I think it should have a comprehensive overhaul. The descriptors need revisiting, with the ludicrous 20-metre rule abolished and 50 metres restored. Bringing back assessments in house from the outsourcing companies is gathering support. The assessors need to be better trained, whoever employs them, and have no targets to meet, internal or not. Above all, the hostile environment, which we hear so much about from claimants, must be banned.

To summarise, I long for there to be a cross-government collaboration with disabled people themselves, not their proxies, which has real clout in making independent living a welcome reality once again, and I would like to hear the Minister say that she will follow this up.

I shall end with a more upbeat message. Disabled people in the media are becoming more visible year by year as TV presenters, comedians, actors and reporters. Long may this continue. I look forward to the debate. I beg to move.

--- Later in debate ---

[Baroness Thomas of Winchester]

My Lords, this has been a most interesting debate, and I thank all noble Lords for getting across so much in such a short time. I warmly congratulate the right reverend Prelate the Bishop of London on her most impressive maiden speech, and I thank the Minister for her reply to the debate. I look forward to opportunities for us to continue the conversation about many of these challenges in the coming months.

Motion agreed.