Lottery Lives

By Nigel Perfect

The charity RADAR defines Independent Living as:

• Having full choice and control over how you live your life; and
• Being able to get whatever support you need to take part in work, in education, in the life of your local community, in democracy or in leisure activities.

According to RADAR, disabled people are the only group of society, along with criminals, who do not have the legal right to choose where they want to live. It is quite easy for the majority of the population to move from one area to another without having to think about anything more stressful than moving house or finding a job. For a disabled person requiring care and services it is more difficult because they may not receive the same level of support as they did in the area where they previously lived.

Lord Ashley's Independent Living Bill seeks to address some of these issues and would guarantee for the first time, in law, the right of a disabled person to choose where they want to live. It would not only aid those disabled people going through transition but would give all disabled people more choice with regards to how they live their lives. The government has published the Independent Living Strategy to try to combat this.

RADAR’s Aidan Haggitt told me why, in his opinion, this is a flawed strategy and why it is vital that this bill is given its full support.

 

"Young disabled people have very limited opportunities for moving away from the parental home and these are more often determined by service availability and eligibility criteria, than by young people's' choices about where to live and who to live with," he said.

He also told me why it is relevant to transition:

“Without a legislative guarantee and without their right to make these decisions and choose where and how they live enshrined in law, disabled people won’t have anything to fall back on if an authority says ‘Sorry no can do’. You’ll still end up with situations that the livability campaign has been highlighting with 21 year olds living in old peoples homes and simply not having a choice.

The Independent Living Bill has been introduced twice in the House of Commons, having passed through the House of Lords, and has not managed to make it through to the second session. Anne McGuire, told me that the government “have no difficulties” with the principles of the bill but wouldn’t decide whether or not to legislate on it until 2013. “We think we should allow the current developments to progress rather than moving at this point to a legal right for independent living,” she said.

But this isn’t good enough for Roger Berry, the bill’s backer in the House of Commons: “I certainly don’t find that acceptable, I think if within a year or two it’s clear that there are some changes that are obviously required then we need to legislate more quickly. I think it would be quite wrong in my view to write off the possibility of legislation for five years, five years is far too long for far too many people to wait.”

 

The government is confident that their cross-government Independent Living Strategy will tackle the problems effectively. But the strategy is in essence an extended consultation which contains a deadlines and promises on a number of issues related to independent living for disabled people, including those going through transition. So I asked the Minister for Disabled People what results from this strategy would lead to a push for legislation. She said:

“We will review it, once we see how our independent living strategy rolls out and where we see the changes, and the monitoring of it. It’s not just a strategy that’s going to get dusty on a shelf, it’s going to be a living strategy.”

The National Centre for Independent Living have run a campaign called ‘Our Lives, Our Choices’ for a number of years trying to raise awareness of this and a month ago they lobbied parliament to raise awareness of the issue. Sue Bott, its director, told me that the government’s decision not to review the decision for another five years was “kicking the ball off into the long grass, really.” And she highlighted to me the main problem most disability campaigners have with the government’s attitude to independent living, transition and disability policy in general:

“I think what the government aren’t quite getting hold of is the reality of people’s lives on the ground and how appalling support services are and what a restriction that’s placing on people’s lives. I mean the government comes out with a wonderful policy and then seems to expect that everyone will run with it and implement it but we need legislation to underpin these reforms and make it happen,” she said.

At a ground level there is a problem with the definition of independent living relating to transition. Two social workers, one named, one unnamed, raised this issue when I spoke to them about how it is perceived and acted on at a local level. And the relevance to transition is most pertinent here.

Claire Jackson (named changed on agreement of anonymity) works in the adult services team in a council. The level of funding given to children’s services is far higher in her council than that given to adult services – a significant factor in the creation of the perceived ‘cliff edge’ that exists:

“In children’s services, it’s not quite a cotton wool approach but it’s like ‘ooh they’re disabled, and oh poor children with disabilities, we’ll put all this care in at three thousand pounds a week’ and they come to adult services and we deal with people who are severely and multiply disabled and they’re able to live in flats with minimal support which is how it should be. We might see the same person and ask why they aren’t in residential care, why is all this being done for them, yes they need support but it can be given in such a way to enhance somebody’s independence.”

Steve Scott echoes the sentiments of the adult worker. He’s worked in both child and adult services so he has the ideal perspective on the different attitudes between the two services:

 “There’s a difference in everything, the approach in children's services seems to be ‘you can’t do that you can’t do this’ and I say well when have you given them the opportunity to do it. I think it’s a cultural thing from education to work, it’s a challenge for parents, you’d be surprised and I’ve been around long enough to know, I’ve seen someone at 18 start things and by 25 they’re living on their own with a job. I’ve seen enough stories of that to know that you’ve got to push people a bit. What they start at 18 or19 will be the pattern for the rest of their lives. ”

Claire warned me what the difference would mean for disabled children: “We’re creating disabled children who are dependent and it’s difficult for them to fit back into society after being in a cotton wool environment for most of their childhood.”

The independent living bill would guarantee disabled people’s right to have the same care package wherever they want in the country. At the moment, a person living in Bristol wouldn’t be guaranteed the same package if they moved to a different area because the eligibility criteria might be different. In adult services, Bournemouth Borough Council only looks after those with critical or substantial needs (the highest two of the four). In other areas, people with moderate or low needs (the two lower brackets) might be eligible for support. So if someone receiving a substantial level of support moved to an area where they were only able to receive moderate support they would, under the current system, not be guaranteed the same level of support.

It is this ‘postcode lottery’ aspect of care provision that the bill wants to tackle. Sue Bott says it’s about basic rights. “It’s not a sustainable argument to say that in one part of the country your human rights are going to be respected and in another they’re not. The government has a responsibility to lead and they’re completely failing in this area to give any leadership at all.”

This ‘postcode lottery’ is particularly relevant to transition. Claire Jackson said that because it is the end of the school year she has received lots of calls from parents of disabled children who have been schooled outside the boundaries of their local authority and had come to the end of their education. If a young adult wanted to stay in that local authority (where their schooling was), in an ideal world that teenager would be taken on by that local authority. But what is happening, in her view, is the local authority where the teenager’s home is still have to fund the child so not only do they then have to return home, but they may have to do so on a care package that isn’t as all-encompassing as before:

“It’s like they’ve still got an umbilical cord linking them to the place where they were born and that shouldn’t be the case, they should be able to move more freely. We shouldn’t be thinking, ‘oh if they come back here we could fund them for half the price’. It should come down to choice and empowerment and where they have to live.”

But Steve Scott sees it differently:

“It’s probably the right way because in the past what would happen they’d get rid of people. It used to happen in London, they’d pay for someone to move to Somerset and then that authority has no responsibility anymore. So it’s to stop authorities doing that.”

 

The associated video for this package outlines another problem with this aspect of the bill, i.e. who would payfor a ‘care passport’ that could be used across the country.  Roger Berry suggests that the bill would actually save money because it would enforce certain standards related to housing but Mark Harper, the Shadow Minister for Disabled People disagrees.

But what do the opposition think?

Shadow Minister for Disabled People Mark Harper told me: “‘We’ve pretty much come to the same conclusion as the government have, which is that we share the objectives of Lord Ashley and what he wants to achieve but we don’t think that passing another piece of legislation is the right thing to do. What the government really need to do is make a reality of the laws we already have in place to make sure they reflect people’s actual experiences rather than just being there in writing and not reflecting the experiences they have in reality.”

This isn't what independent living campaigners want to hear but the movement has started to try to put an end to some disabled people's 'lottery lives'.