Today we launch Leading my life my way, a new research report looking at young disabled people’s experiences of using support services to live independently.
We carried out this research because we wanted to find out what young disabled people expect from care and support services, what their experiences are and to what extent they are supported in different areas of their lives.
Our research shows that young disabled people don’t have sufficient control over their care and support plans and consequently in major decisions affecting their lives.
With this in mind, we designed our research to ensure young disabled people’s experiences and opinions were at the centre, through a series of face to face and telephone interviews as well as a wider survey of disabled people aged 17 to 30.
Young disabled people want to do all the things that every young adult does. But the social care system is letting them down and holding them back in many crucial areas of their life. This is leading to social exclusion and affecting young disabled people’s wellbeing.
Support with personal care
While access to support is a significant barrier faced by young disabled people, our research found a much more widespread issue of being able to access to support in other areas like employment. Of respondents to our survey, 60 per cent said they aren’t getting the support they need to get into work.
A quarter of our survey respondents said that they are either only ‘slightly’ or ‘not at all’ involved in making decisions relating to their care and support plan. This highlights a worrying lack of choice and control young disabled people have in making decisions about how they live their lives.
Information and advice
Our research also found that information and advice services could be improved to better serve the needs and expectations of young disabled people. While a fifth of our respondents would like to access information and advice on smartphone apps, only one per cent are currently able to.
The impact of poor quality information and advice was clear in interviews we conducted with respondents, with many instances of young disabled people not knowing how or where to access meaningful support in areas such as finding a job, managing support using direct payments and finding the right place to live.
A lack of support beyond daily living activities can result in a negative impact on young disabled people’s wellbeing.
Of the young disabled people we surveyed, a majority had experienced a significant setback in their lives such as not getting a college place or somewhere they wanted to live.
Of these people, 82 per cent had not had this resolved within six months, despite this being an obligation of local authorities under the Care Act. Such experiences are resulting in many young disabled people feeling that their lives are on hold while they struggle for resolution in specific areas of their lives.
Our research provides evidence that many young disabled people are not being supported to do the things they want to in their lives.
This is a denial of opportunity resulting in many young disabled people feeling they are being left behind while non-disabled friends and relatives leave home, progress in work, continue in education, play an active role in their communities and develop relationships. If we don’t get social care support right then the huge amount of potential young disabled people have in these areas could be wasted.
The Government needs to look beyond funding support for the ‘basics’ in social care and ensure young disabled people are supported to live independently in all areas of their lives.