Disabled People

Baroness Campbell of Surbiton Excerpts

Thursday 9th May 2019 Lords Chamber

[Baroness Campbell of Surbiton (CB)]

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,

“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.