3.2.1. Education and Employment
Few of the care professionals we spoke to engaged with issues of education or employment. In contrast, most of the disabled participants told us about their experiences of working and learning. Several disabled participants told of attending college, with mixed levels of success. Where educational opportunities aligned well with their preferences and interests, opportunities for further education were very positive. James, for example, studied arts, fashion and music technology at college, which he found to be a very rewarding experience. Where educational opportunities were not well aligned with their wishes and preferences, these disabled participants reported less positive experiences. Amanda did not have as much choice about what to study at her local college, and so gave up going to college. She now undertakes a training for work placement which is better suited to her skills and interests. Other participants gave rather troublesome accounts of leaving education or employment:
I did go to college. […] And there was a bit of bother, bullying sort of thing. I can cope with bullies but this was just a bit too far. And I chose, I didn’t like the course anyway, it was gardening and gardening wasn’t for me. I don’t mind pottering about here doing the weeds outside, but this was full-on building and brickwork.
Alex gave two reasons for giving up his college course: he mentioned that the subject of the course, which involved garden landscaping, wasn’t right for him. Unfortunately, he also referred to “bullying” as a reason for giving up on his college course. This suggests that not only would better support for educational choices which align well with disabled peoples’ interests and preferences be beneficial, but also better support when problems occur within educational contexts would allow people with disabilities to continue in education longer, providing greater future employment opportunities.
Most of these intellectually disabled participants reported undertaking some voluntary work, often in charity shops, and often doing manual labour like cleaning, but also in community voluntary services like disability sport, community keep safe schemes, visiting older people, and volunteering in self-advocacy organisations. All of those participants who spoke of either past or current experience working in a voluntary capacity would like more employment opportunities and would like to engage in paid work. Three of the younger participants (aged 25–34) reported engaging in paid work, which they enjoyed: James worked one day per week in a café; Amanda worked a day a week in a hairdressing salon; and Carrie had previously worked a few hours a week in a clothes shop, but had recently been made redundant, and is now actively looking for new opportunities for work.
I’ve looked for a few jobs. I’ve looked for schools and making teas and probably working with old people but […] there’s an old people’s house. They’ve sent, mum sent a CV in and they haven’t got anything going at the moment but hopefully when something comes through then there’ll probably be a job.
Some older participants spoke of previous work in manufacturing or specialist disability employment roles. Rebecca, for example, previously worked in an adult training centre, making cord stools and cane trays, which she said she enjoyed. She now does a lot of volunteer work, and has recently been trained by a mentor to use the till in the charity shop she works in. Similarly, Tracey spoke with pride about her previous work in a shoe factory, but “that was 2004 when I got made redundant and since then I’ve only done like charity shops, but now, because I’m worse disabled [physically] I can’t do a lot, but I am doing an English course”. In summary, there appear to be quite limited employment and education opportunities for intellectually disabled people. Yet all of these participants enjoyed the work that they either currently do or have done in the past, and would value opportunities to engage in suitable paid employment. The question of paid employment is, of course, linked to the issue of benefits and sanctions. Two of these participants spoke directly about problems with benefits relating to employment, other participants highlighted the impact of the so-called ‘bedroom tax’ on their housing choices.
During a discussion about benefits, Beth (a supporter), told an all-too-familiar story about the challenges of keeping track of benefits in the age of sanctions:
They both should get ESA in the Support Group, however, James’s hasn’t been paid [for five months] because allegedly they sent a letter to where he used to live saying he had to go for an interview—which he shouldn’t have to go for an interview [because he is in the support group], but they wrote saying he had to go for an interview—and no one seems to know anything about this letter. And they never send a follow-up or a request: could you get in touch because you didn’t go to your interview. And so his payments were just stopped. Because James’s mum couldn’t understand why James didn’t seem to have any money and yet Amanda, since she’s moved in here, is paying out for more things, has no less money than she had before. And so that’s obviously being chased up at the minute.
Here, we see some of the challenges that people with intellectual disabilities can experience when confronted with official correspondence. It seems that this particular letter was sent in error, and the sanction was also applied in error, as James is entitled to ESA in the Support Group. Yet as a result of this error, James has been without his major income replacement benefit for five months, at a time when he had just moved in with his fiancé and had higher-than-average expenditure needs. James’ parents are working to resolve this issue on his behalf, but errors of this nature simply should not happen.
Another participant, Suzanne, explained that she had been accused of falsely claiming benefits because she had travelled to different organizations four times in a year to promote disability sport and had not secured permission to work. Suzanne’s story highlights the ways that physical health problems can compound the difficulties of navigating the social welfare system for people with intellectual disabilities.
In 2015 when I got cancer, I worked four times in that year going to organizations and saying this is what [disability sport] is like, and so I basically I’ve just expenses and I got £115 for doing it. But that happened four times that year and. And social security have got onto me and said “right you owe us £1000 for falsely claiming benefits”. And I said look, I know, I know, I said look I’ve got permission to work in 2016, and the reason why I didn’t get permission to work in 2015 is because it was just like too much for me to think about. I had enough thinking about like staying alive, let alone like I don’t know, I don’t know. […] So yeah, I said, you know, it was just too complicated to jump through all the hoops when I couldn’t even really think what I was on about half the time. You know, because you do get, chemo, you know, your brain it kind of goes absolutely to pieces when you’re on chemotherapy. I was just, it was pretty awful. You know, I wasn’t in the mood to like go press one if you think this, press four if you think—I just couldn’t concentrate on anything. So I’ve not heard from them yet to whether I’ve got to pay, that was my appeal.
These experiences highlight a major tension between intellectually disabled people’s desires to lead meaningful lives, to work and to contribute to society, and the bureaucratic, punitive, sanctions-focused nature of the contemporary UK state benefits system.
3.2.2. Housing and Accommodation
The findings from this project told a mixed tale around housing and accommodation choices. Whereas many of the disabled participants were happy with their accommodation, others were living in unsuitable provision, had struggled to find appropriate accommodation, or had waited a long time in unsuitable accommodation before finding an appropriate home. As may be expected, decisions around housing require the balancing of a range of competing demands around location, size, available accommodation, appropriate care and funding constraints. Care professionals who had been working in the sector since before the Mental Capacity Act 2005 came into force reported an improvement in the approach to placement decisions:
They were able to ask questions about where it was, who they’d be living with, what the environment was like, and also have pictures, given the option if they’d like to come out for a visit, if they’d like to come for tea, if they’d like to come and have an overnight stay. So if they said I don’t like it—because we had a vacancy for a little while because we had a chap who moved out into supported living, and somebody did come and they went “I don’t want to live here,” so they didn’t move in. People actually were given that choice and I think it’s slightly different now, whether people are given a greater level of input on where they want to live. When this was opened in 2005, and all the assessment work took place in 2004, there was no choice given by the local authority; they were just told this is where you’re moving to. But obviously we do things differently now.
(Leslie, Care Manager)
This story directly contrasts the pre- and post-2005 approach, which demonstrates some forward movement in supporting housing decisions for disabled people.
Two key issues that were raised by disabled participants in relation to housing were the length of time it can take to find an appropriate home, and the impact of ‘bedroom tax’ on their accommodation choices. Michelle, for example, moved into her own place six weeks before the interview, having previously lived in a group house, and a residential college before that, “I wanted to do that for about, it took me about two and a half years. I was on the key wait for ages. Because they couldn’t find anywhere suitable.” Tracey was also looking for a new house because of a deterioration in her mobility:
I’m on house swap and I’d like to move down town a bit nearer or somewhere that ain’t far from the shops. Make it easier for me because when I go home now I’ve got to go down to the town, catch the bus, come back and then I’ve got about five minutes’ walk, but it takes me half an hour. So I’d like to be a bit nearer the town. But I like the place where I am. It’s a one-bedroom flat and it’s big enough for me so that’s what I’d like to do. If I had a two bedroom, it’d be ideal but you’ve got to pay bedroom tax. You see, my boyfriend, he’s got a two-bedroom bungalow but he’s got a lodger. You see I would like a bungalow, a one-bedroom bungalow, but there’s not many around. So I’m stuck really where I am.
The contemporary limitations posed on housing choices for individuals reliant on state support (the ‘bedroom tax’ and the shift to Universal Credit) are also compounded for people with intellectual disabilities. Finding a suitable property through housing swap is difficult enough, even without the added challenges posed by balancing physical needs and intellectual disability. Whilst housing decisions are inevitably constrained by available properties and support, the participants in this study appeared particularly constrained in the choices available to them around housing.