Disabled and older people across Scotland have been given independence by a new strategy putting them in control of the care they receive
Fiona McCall was born with muscular atrophy, a wasting condition affecting the major muscles in her arms and legs, making it difficult for her to walk. Four years ago, she also developed chronic ulcerative colitis, an inflammatory bowel disease.
Instead of having carers come to her home, McCall uses her allocation of social care funding to employ a personal assistant to help her continue working and live a full, normal life.
She is one of a growing number of people making use of self-directed support, an initiative which gives service users the freedom to purchase for themselves the care that best suits their needs – whether that means a full or part-time assistant, specialist equipment, housing adaptations or respite care.
“I was attracted to using self-directed support because of the flexibility that it allowed and also because I was able to manage it myself and to arrange it around my lifestyle,” says McCall.
“So rather than me having to adapt to carers and their timetables and when they were able to come in, using self-directed support allows me to keep my lifestyle going and to employ people directly myself that I can then work around my timetable because… every day can be different.” For McCall, the biggest advantage has been the control she has gained over her own life.
“Probably the most important way that it’s helped me is that it’s allowed me to keep on working and keep on doing as much as I can…both physically and socially,” she says. “I also like the fact that I am involved in interviewing [the personal assistant], I advertise, I select, I interview and then I can then build a relationship up with them. The flexibility and that continuity of support from people that I know and I can trust is important.” She also finds that self-directed support has encouraged her to broaden her horizons by trying things she might once have dismissed as impossible. For example, she recently took a trip to the United States, part holiday and part training course, because she was able to take her personal assistant along to help. “I wouldn’t have done that if I didn’t have the self-directed support,” she says. “I would have said, ‘ah no, I can’t go abroad anymore’ so I would have cut that whole aspect out of my life. I think the important thing with self-directed support is that it actually encourages you to try and manage more, that probably, for me, is the most important part of it.” Susan Bick has had MS for over 30 years, and for the last ten has found her balance in particular so badly affected that she can no longer work or drive. She now uses a direct payment from her local authority to employ a personal assistant, Lizzie Philip, for nine hours a week. Finding the right person wasn’t easy, Bick says: she advertised the position for a year but felt the people who applied weren’t suited to the role.
“And then Lizzie came along and it just worked out perfectly,” she says. “Lizzie had been made redundant and I was looking for somebody. We go to college one day a week, we also go to yoga and pilates a couple of other days. I get to meet people, different people, and it is just a social thing as well, Lizzie is here just for…a blether and it’s been great, and relieves the pressure on my husband as well.” For Philip, too, the arrangement works perfectly. “Basically, it is a fantastic role to have,” she says. “I get to work with an individual in their home and in their community. It’s very down-to-earth work. I am helping someone get out and about, which is very fulfilling for me to see the difference in that person.
For me, personally, to have an employer like Susan is fantastic.” Self-directed support isn’t just the latest buzzword, but an attempt by the Scottish Government to revolutionise the way social care services are provided. A ten-year strategy has been launched which aims to make self-directed support, already used by 3,500 people across Scotland, the default means of providing services. The strategy will be underpinned at the end of the year by a Bill enshrining individual choice and control in social care law.
“Traditional methods of a local authority deciding how to provide care to someone assessed as needing support can be restrictive and may not meet an individual’s needs in the way that suits them best,” says Public Health Minister Shona Robison.
“The increasing numbers of people accessing social care and support and the range of individual needs mean that services will have to be much more flexible in the future. We want to see many more people being given the chance to change their lives for the better.” Under self-directed support, people receive individual budgets to buy or arrange their own support packages to meet their assessed personal, social and healthcare needs.
It combines a direct payment from a local authority with funding from other sources such as the Independent Living Fund, Access to Work and the Disability Living Allowance.
Three test sites – in Glasgow, Highland and Dumfries and Galloway – have been given £1.2m over three years to work on increasing the uptake of self-directed support, which, in the form of direct payments, has grown by only 1 per cent a year since its inception.
The case for self-directed support is clear.
According to research commissioned by ministers two years ago, people who use it benefit from greater choice – especially crucial when it comes to the recruitment of a personal assistant – flexibility and independence. Self-directed support has freed people to make their own lifestyle choices and helped keep families together. Most critically, the quality of care under self-directed support was often found to be “exceptional”, thanks to the genuine caring relationships developed with personal assistants who took a real pride in the job.
However, the research identified a number of barriers which would need to be addressed for the policy to be implemented on the scale envisaged by ministers. One was the training of social workers, who for most people would be the likely gateway to accessing self-directed support. Training on self-directed support was found to be “patchy” and hard for social work departments to prioritise against other pressures of the job. Securing time away from frontline duties for enough social workers to make a real difference to the uptake of selfdirected support would be hard to achieve, it said.
James Elder-Woodward, convener of the Independent Living in Scotland Project, welcomes the strategy as a positive step towards accelerating the take-up of selfdirected support across Scotland.
“Disabled people have advocated for this for over fifty years, and it’s now beginning to become mainstream social care policy,” he says. “We all want to be able to make our own choices and take control of how we live our lives. Wouldn’t you want to make your own choices about when to get up, what to eat, who to socialise with?” He believes training for social workers, including new entrants to the profession, will be fundamental for the policy to gain traction.
Another barrier is the loss of economies of scale that accompanies the personalisation agenda: what happens to a day centre attended by thirty people when fifteen of them decide to opt for self-directed support instead? “It’s very difficult to find the money to continue funding the centre when the other fifteen are out enjoying themselves,” he says.
Discussions are now under way with the Scottish Government to mainstream independent living within general social policy, says Elder-Woodward, with a particular focus on housing, communication, advocacy and the portability of care. What is now needed is to turn policy into practice and to see a far greater degree of consistency in the approaches taken by local authorities.
“The real problem is that 32 councils have 32 different ways of implementing the policy,” he says. “The strategy is trying to address that by encouraging local authorities to adopt one way of implementing the policy.” Ultimately, councils must get round the table with disabled people with a view to redesigning the way services are provided.
“The one thing I would urge local authorities to do is to start talking to disabled people about the future of independent living and self-directed support,” he says. “They need to talk to disabled people from the outset so disabled people can own the service as much as the local authority.” For Susan Bick, certainly, the control she has regained over her everyday life through self-directed support has been revolutionary.
“It changed my life,” she says. “If it wasn’t for Lizzie, I certainly wouldn’t be out the house as often as I am. I certainly wouldn’t be at college or going to yoga and pilates. So, yeah, it has changed my life, and I’m sure other people would find that as well.”