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(see below for analysis of proposals for unqualified staff to work in mental health)

Tackling social exclusion is the cornerstone of New Labour’s policy on care. But a ground-breaking report from disability charity Scope reveals that disabled young people with high support needs are still being excluded from society. Alex Dobson reports.

Exclusion still the norm for young disabled people

Practitioners have often voiced concerns that there is very little information available looking in any kind of depth at young disabled people who have physical, sensory, communication and cognitive impairment.

And alarmingly, while government strategies are targeting education and helping people back into work, a new report by the disability charity Scope indicates that for this vulnerable group, much more basic issues need to be addressed.

The report, That Kind of Life¹, used a number of methods to find out what the young people really feel about the quality of their lives and is one of the first to seek the views of young people with complex needs.

The answers are likely to make uncomfortable reading for policy makers. Young people report major failings in the very services that are aimed at providing teenagers with a better quality of life. Key issues highlighted were isolation, lack of control, not being listened to, feelings of being unsafe, and the denial of opportunities to make a contribution to their own communities. They also point out there are significant differences between what social exclusion means to government and what it really means to a young person with high levels of need.

Difficulties with communication were found to be key. Those who communicated by using body language were sometimes labelled as attention-seeking. Failure to recognise the need for assistance with communication inevitably led to breakdowns of understanding between the individual and the service on offer.

Rights, accessibility and choice were also raised as issues. Engagement with local communities, the opportunity to "go out and about" like other adolescents, and living close enough for your family to make frequent visits are fundamental rights. Yet the evidence is that young people are being denied some, or even all, of these. The picture is one of individuals who are assumed to be "happy to go along with anything", and as a result are being denied any real choice.

In the first stage of the research project, four groups were asked to describe what social exclusion meant to them, while the second stage involved researchers drawing on the individual experiences of 44 young people between the ages of 15 and 20.

"The first stage of the research took four to six months and the second stage took a year," says report author Jenny Morris. "We took a long time to do the visits because they were not traditional interviews and we needed to be sure we were finding out what the views of these young people really were.

"What we found was that unless policy is informed by the experiences of these young people then it will not address their needs.

"Many of them were even denied the possibility of communicating because adequate assessment was not given - or the equipment provided was unavailable," adds Morris. "Inadequate or out of date - it amounts to a violation of their human rights. These people are being silenced because they are simply not given the support that can allow them to have a voice."

These results will come as no surprise to others working in the field. Beverly Dawkins is profound and multiple learning disabilities officer at Mencap.

"In Mencap's experience, people with more profound disabilities do encounter the difficulties highlighted in Scope's report," she argues. "There has been a steady increase in the number of children and adults with profound and multiple learning disabilities in recent years. This trend is set to continue as medical progress advances and yet, families and carers often face isolation and ignorance as they struggle to gain understanding and appropriate services."

"Service providers must be challenged to meet the needs of people with more profound disabilities - some of the most marginalised and vulnerable members of society," she adds. "They also need to offer more high quality, targeted support services to parents who desperately need them."

Paul Gemmill, director of policy at the Disability Rights Commission (DRC), has serious concerns that the needs of this group of young people are not being adequately met, and the report highlights many of the issues that the DRC was already aware of.

"It demonstrates what we have found in our work, that disabled young people often fall between the cracks. There are gaps between health, education and social services, which means that the young people concerned often don't get the necessary support. Each sector is saying that another service should be responsible."

Gemmill says that cost is often used as a way of denying choice, but argues that careful consideration of all the options can result in a much more successful outcome without putting an extra burden on overstretched budgets. "The report details the way in which young people are often placed in residential or nursing homes a long way from their own families and community. This is an extremely expensive option that benefits no-one," he says.

The government white paper on learning difficulties, Valuing People, was published in March and has a strong emphasis on independence, choice, social inclusion and civil rights. So it seems unfortunate that the experiences of these young people seems to run counter to the government's admirable aims.

But what is the government currently doing to address the needs of disabled young people? Valuing People has at its centre three core principles. First, that service models require appropriate implementation; second that relationships between staff and the service user are the cornerstone of successful outcomes; and third that it is the individual being offered the services who is pivotal.

The government says that it is also addressing at least some of the issues with a series of initiatives including:

- £60 million of the children's services grant earmarked for more support for families with disabled children from 2001-2 to 2003-4, resulting in more home-based help and more access to key workers.

- £220 million from 2001 to 2004, as part of the Special Educational Needs and Disability Act, to improve the accessibility of mainstream schools for disabled children.

- Additional family support through statutory and voluntary sectors, including co-ordinated health and social care packages to an additional 6,000 severely disabled children by 2002.

- New National Information Centre for families of disabled children launched this year by Contact a Family, with government funding of £500,000 a year.

- Action to enable more disabled children to use sport, culture and leisure activities.

- Workshops run by the Children and Young People's Unit, which will focus on the needs and views of children and young people with disabilities.

- £10 million initiative to supply communication aids to children with special educational needs and disabilities. The project will have at its heart the concept of "personal" equipment geared to individual needs.

While this list of proposals measures is welcome, That Kind of Life suggests policy makers need to focus social exclusion measures not just on jobs and education, but on policies that can deliver basic human rights.

Richard Parnell, head of research and public policy at Scope, argues: "This report can help make the difference between young, disabled people taking part in life or being excluded from society. It's clear that they are marginalised and excluded because of their disability, and that their needs are not being heard in the arenas where policies are developed. Therefore, current initiatives to tackle social exclusion will not address their experiences as they grow into adulthood."

"We want them to ensure that they go beyond the physical and basic needs of these young people," he adds, "and take into account their views and opinions on how they wish to lead their lives, if they are ever to achieve true equality."

¹ That Kind of Life, published by Scope in partnership with Jenny Morris and funded by the Community Fund, will be able from late September from 020 7619 7341. The report will be priced at £3 for individuals and £12.50 for organisations.                    

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A new grade of worker to relieve qualified mental health staff of mundane tasks has been proposed by a key report, but will the idea come to fruition? Anabel Unity Sale reports.

Proposals promise relief for mental health workers

Reinforcements for staff working on the front line in mental health services could soon arrive in the form of non-qualified workers who will free up approved social workers to focus on clients' more crucial needs.

The proposals to recruit support, time, recovery (STR) workers have come out of the final report from the workforce action team on the mental health National Service Framework.

The team was set up by the government in late 1999 to investigate the short-term practical solutions necessary to deliver the mental health NSF. It was also charged with coming up with innovative ways of ensuring the appropriate workforce is recruited and retained.

The establishment of an entirely new non-qualified workforce to deal with mental health service users is the most radical solution among the report's proposals.

STR workers would take the strain of dealing with users' more mundane needs away from qualified professionals. They would promote independent living among users, provide support with daily living activities and encourage clients to take responsibility for their practical needs. STR workers would also be part of a care team able to spot the warning signs of relapse and facilitate early intervention.

The report spells out what would be expected of STR workers: they must listen, talk, spend time, empathise, be accessible and flexible. It also stipulates what they won't do: co-ordinate the care programme approach, provide clinical or medical treatment, be involved in sectioning or compulsory medication other than to support the client, or be a service manager.

STR workers would have either "a small caseload with intensive activity, or a large caseload of more general support" depending on the user's needs and the service setting.

If each STR worker had an average caseload of 10 users, the report predicts that England would need to employ about 10,000 of them.

Existing mental health staff in non-professionally affiliated roles, such as assertive outreach team support workers, could easily be converted to the STR role. Others, such as acute ward nursing assistants, would need the focus of their work changed and additional training and support undertaken before becoming an STR worker.

Steps are proposed to stop highly trained staff disappearing up the career ladder and into management through the creation of a senior practitioner grade for approved social workers. The report emphatically adds that there is a "real need" to minimise the risk of losing such skills by "rewarding continuity in practitioner roles".

Acknowledging that ASWs carry weighty responsibilities, the report recommends that they receive the equivalent of five days' continuing professional development each year to help them do their job. It also suggests that a national pay agreement could help tackle the recruitment problem among ASWs, currently exacerbated by varying pay levels.

Most mental health personnel would agree with the need to recruit more staff, have protected study days and a nationally negotiated higher wage for ASWs. But does the government feel the same? Can existing staff expect to see tangible change as a result of the 175-page report?

While the Department of Health would not be drawn on the extent of the report's influence, a DoH spokesperson says health minister Jacqui Smith is examining its recommendations closely before deciding on any further action.

Action team member and Dorset council social services director David Joannides is adamant that the report is neither a wish-list nor a blueprint. "Much of the report provides health, local authorities and individual managers with a framework for tackling most of the workforce issues that are within their ability to develop," he says.

Joannides is confident that introducing STR workers would help reduce ASWs' workloads. He says a similar approach of using unqualified staff in services for older people and disabled people has been successful.

He explains: "[Unqualified] people can be equipped, trained and skilled up to provide support and recovery assistance that the current workforce is struggling to do."

Ironing out pay inconsistencies for ASWs would also help in recruitment, Joannides says. "Recruitment and retention would be assisted by fairer remuneration, but to be quite honest we need to understand more about what retains staff."

Melba Wilson, policy director at mental health charity Mind, supports the idea of STR workers being part of a user's care team.

She says: "If it's a question of STRs trying to promote better mental health through early-warning mechanisms, this is a good thing."

Establishing such a workforce, she says, could help attract back some of the "good people" who have left mental health services after becoming disillusioned. This would include black and Asian people who could target mental health service users from those backgrounds, she adds.

But Wilson warns: "The fear is there won't be safeguards of accredited training and it won't attract people. This has to be a thought-through solution, otherwise it is just a good idea that falls on the cutting room floor."      

* Final report of the Workforce Action Team from www.doh.gov.uk/mentalhealth/wat.htm#report