Disabled young people and their families have long criticised services that are intended to ease their transition to adult care. However, there are signs that the issue is at last gaining political currency. Anabel Unity Sale reports on what needs to change
When Sophie Reilly was a teenager her ambitions were typical for her age: to discover the world for herself and make her own decisions. The only thing holding back this intelligent and determined young woman was her disability. She has an undiagnosed neurological disorder, which began when she was eight, is a wheelchair user and is registered blind.
Yet, it was not her condition that stopped Reilly pursuing her dreams; it was the trouble she had accessing the right services when making the transition from children’s to adult care.
From receiving various health, education and social care services as a child, at 18 Reilly was transferred to adults’ services and found an alien system. “The biggest thing was that services were suddenly less personalised. When I was younger the focus was on me, it was upbeat and they considered what I wanted to do. This disappeared when my case files were handed over to adults’ services and I felt completely lost because I was now in a huge system. I felt like I was just another number.”
Now 27, and an independent disability consultant and volunteer, Reilly spent years fighting for the right to access the services she needed, including a long battle for care and support while reading European drama and French at university. “Finding out about the services took years and there were so many walls to get over.”
Reilly’s experience of transitional services for disabled young people is far from unique. Campaigners, charities and the voluntary sector have long argued that more needs to be done for this client group, and last month a series of three parliamentary hearings to discuss services for disabled children were held on the issue.
Lobbying from charities
The hearings were the brainchild of Ed Balls, economic secretary to the Treasury, and are part of a wider Treasury review of children and young people’s services. This will feed into November’s comprehensive spending review which will formulate the government’s public spending plans for the three years from 2008.
The hearings took evidence from a coalition of charities, including Contact A Family, Mencap, the Council for Disabled Children and the Special Educational Consortium.
The government has pledged its commitment to improving the lives of disabled people through various means. These include standard 8 of the national service framework for children, young people and maternity services for disabled children and young people and those with complex health needs; the January 2005 publication of the joint report, Improving the Life Chances of Disabled People; and the launch of the cross-government Office for Disability Issues in December 2005. And earlier this year the Department of Health published a good practice guide aimed at showing how the handover from children’s and young people’s services to adults’ service should be planned and managed.(1)
Despite this, the experience of transition for many young disabled people is at odds with government policy and falls short of what they, their parents and carers want.
When disabled children reach 14, they receive a transition review at school under the Education Act 1986. Teachers, social services and health professionals meet them and their families to discuss what they want to do in the future.
Lucia Winters, development officer at the Council for Disabled Children, says, although most disabled young people do have some kind of transition plan in place, they are not always produced in a person-centred way. She adds that some local authorities have set up multi-agency transition teams, but they are few and transition services in England are “patchy”.
Contact A Family chief executive Francine Bates agrees the success of transition services depends on the local authority providing them. The charity’s helpline receives many calls from parents whose children are going through the transition process and are worried because they are unable to access community care services as they approach adulthood.
It is not only the parents and carers who have difficulty finding their way through the maze of services for disabled young people. According to Barbara Waters, chief executive of Skill, the National Bureau for Students with Disabilities, the young people themselves often face hurdles, particularly when it comes to education.
All young people aged 13-19 have access to a Connexions adviser to discuss their career and educational options as they approach leaving school or college. However, Waters says some disabled young people, often in mainstream schools, do not gain access to a Connexions personal adviser when they need one, or they may slip through the net altogether if their disability is a hidden one.
Another factor contributing to the problem is the attitude of some health and social care professionals towards disabled young people. Richard Parnell, head of policy at Scope, says the disability charity has found that some practitioners think disabled young people do not have the ability to make their own choices regarding the future. “Our direct payments research has found some social workers are reluctant to help young people to use them because they don’t think they are competent enough.”
So what can be done to ensure that transitional services deliver to the young disabled people using them? Parnell says the first step is to encourage young disabled people to express themselves and make sure professionals are aware of these views.
He wants more advocacy projects, such as Scope’s Voices Through Advocacy project, which trains young people to be advocates. He says: “If a young person does not have speech, or has a learning difficulty, they need a lot of support to articulate their choices, and it is their right to articulate their views.”
Waters argues that all professionals working with disabled children and young people need to understand what the transition process is and their role within it so they can best advise their clients. Professionals, she says, “must not hide behind the Data Protection Act”, and need to become better at sharing information with their counterparts in different services.
Plea for evidence
One simple way to improve the situation for disabled young people and their parents, says Winters, is to enhance the way local authorities and other agencies gather and present information about the options available. “We hear from parents who say they didn’t realise how important the transition reviews were.”
Bates urges professionals who have examples of good practice or suggestions about how to tackle the current situation to send their evidence to the hearings. “We need you to tell us what you think needs to change.”
Meanwhile, Sophie Reilly believes there’s a simple way to improve transitional services for young disabled people. “I’d like to change the whole ethos of adults’ services and encourage them to adopt the positive outlook that children’s services have. There needs to be determination and a positive view among professionals that, together, they and the disabled person can strive to achieve something.”
(1) Transition: Getting it Right for Young People: Improving the Transition of Young People with Long-term Conditions, Department of Health, 2006
Written evidence can be sent to the hearings by 18 August 2006 on www.cafamily.org.uk/hearings.html