Research by disability charity, Scope, has shone a light on the challenges experienced by disabled young people as they transition to independence. The research focusses on the themes and concerns which affect disabled young people in everyday life, including moving into independence and adulthood, public attitudes, choice and control in education, employment and financial security. The ‘Our lives, our journey’ programme follows 18 young people, aged between 16 and 21, as they adapt to adult life and increased independence. Most were students at the start of the (ongoing) five-year research period. Each have one or more types of impairment, including physical or learning disability, mental health conditions, autism spectrum disorder (ASD), visual or hearing impairment, including some with recently acquired disability. What is transition? The recent NCEPOD ‘Inbetweeners’ review explored ‘transition’ in the context of a disabled teenager’s planned and coordinated move from child to adult healthcare services. The review found that expected standards of care for those transitioning from child to adult services are not being met. Scope’s ‘Our lives, our journey’ research takes a broader view of transition as key stages which have a significant impact on a young person’s life. Transition in this context involves becoming more independent, by moving from school to college or university, moving from home to new or shared accommodation, or moving to a new area and starting a job. Transition at this stage of life often means relying less on hands-on family support and building new support networks involving friends, flatmates, educators, co-workers and employers, as well as healthcare and financial support. Scope aims to explore young disabled people’s experiences of these life-changing events over the five-year project, as they are rarely highlighted in disability research. What challenges are experienced by young disabled people moving to independence? The disabled young people in the study told Scope that their daily lives were full of barriers that non-disabled people didn’t have to face. They had fewer choices of where to study, where to live, where and how to socialise and what to do in their leisure time, and where choices existed there was often a lack of disability awareness or support. They had many of the usual aspirations for young people of their age in relation to completing their studies, their career goals, long-term hopes of having a family and home of their own. Independence Becoming more independent was seen as the key to achieving these goals. For some, that meant being able to wash, dress, plan and cook a meal independently. For most it meant moving out of the family home and into university or shared accommodation or having the freedom of being able to live independently with minimal outside support. Moving on to higher or further education was a key factor in achieving more independence. Their most common worries related to the cost of living independently and not knowing how their condition will affect them in the future. In some cases, the practical frustrations of trying to live independently had caused them to give up in the short term. One participant said, “I did try independent living, but the care company that we tried, it didn’t work out, so I just came back”. Leisure activities They took part in a range of leisure activities, including creative arts (drama, singing, art), sports (swimming), volunteering and travel. Their participation in activities in public places, leisure activities, theatres, and even grocery shopping was limited to accessible stores, venues and transport options, and was affected by staff attitudes, particularly for those with less obvious disability. Higher education Higher or further education played a major part in becoming more independent by providing opportunities to move away from home into new or student accommodation where they could live, work and socialise with other people of their age. They could take better advantage of higher education opportunities where their learning was flexible and used online technologies. Universities or colleges were unique environments in which they felt able to socialise and experience the inclusive attitudes of their student peers, with extra support being received and treated positively by all. Those with less visible impairments found that some university staff attitudes were patronising and lacked awareness of disability, but overall, the inclusivity of higher/further education was a much more positive experience than school. They found friendships were rewarding but challenging as it was harder to find friends who understood the challenges of their disability and to maintain friendships when they couldn’t always attend in-person study or social events. Having chosen an educational course, their choice of institution depended on its proximity to the family home or accessibility and suitability of student accommodation and the availability of support or flexible learning, rather than the best for their career aspirations or best reputation. One young person told Scope that their choice of student accommodation had depended on the proximity of their room to the kitchen and shower and having as much on the same floor as possible. Many disabled young people went to open days to judge the location and availability of support for themselves. Many young disabled students had experienced adjustments, flexibility and support from their higher education institutions, including flexible attendance, assessments, study support, non-study support and online learning. A few discontinued their studies or changed institutions owing to inflexibility or poor student support. Online learning helped the disabled young people complete their studies, made studying more flexible and allowed them to study more from home, but also potentially reduced their opportunity for social experiences. Many found having access to disability support workers very helpful. Financial concerns The young disabled people in the research study all had money worries and incurred increased costs arising from their disability. These included costs associated with the need for specialist equipment, such as wheelchairs, medication and therapy costs and home adaptations. They experienced less obvious but significant additional disability-related costs for everyday items, such as extra laundry, bedding, specialist clothing, convenience food which required less cooking. They also had extra travel costs, such as through more frequent use of taxis where public transport was inaccessible, for example because they were not allowed on board a bus with a heavy wheelchair. Parental support Most of the disabled young people in the study depended on their family or benefits to meet their extra costs. This limited their choices and caused them to worry about future costs and whether their family could support them financially into the future. In addition to finances, many relied on their parents for care and emotional and practical support, such as cooking, travel to medical appointments and help with applying for benefits, which they found challenging and frustrating. Those who relied on their parents wanted to gain more independence but worried about how they would cope with less parental support. In a small number of cases, the young people shared challenges arising from their parents’ reluctance to see them as disabled, which can create additional barriers to the young person receiving adequate support. Employment By two years into the research programme, many of the disabled young people had transitioned to permanent employment or were working towards a career. Others were in part-time work while they studied or looked for more permanent jobs. Some who struggled to find work of their choice felt they did not have the right qualifications, skills or experience, or believed that they were not offered interviews or jobs if they disclosed their disability during the hiring process. For those in employment, earning their own money gave them a feeling of independence, and they valued flexible working, feeling supported at work, being given responsibilities and being part of the team. Moving area to start a new job was challenging. One young person found that she lost her previous support network and struggled to adapt to simultaneously starting full-time work in a new job, moving house and moving area, which in turn led to protracted difficulties in the transition and transfer of her medical care. How can rehabilitation and compensation make life easier for disabled young people? Teenage to adult transition, with all that it implies, is one of the most challenging life-stages for young people with disabilities. Where physical, cognitive and sensory impairments were caused by negligence (acquired disability), compensation cannot undo the injury, but it can help level the playing field by providing practical and financial support to overcome many of the barriers to independent living, including adapted accommodation, supported work or education. Our teenage and young adult clients benefit from expert advice and personalised assessment of their current and future needs, based on our detailed understanding of their condition and its long-term prognosis. We work with experienced case managers, specialist SEN education colleagues and disability experts to guide and manage the young person’s transition into supported independent living. This allows them to live safely, study, work and participate fully in all aspects of life, knowing that there is provision for their current and long-term disability-related needs. Along the way, our approachable lawyers often become trusted friends to both the young person and their parents, mediating where necessary to create understanding about safe, independent living, and ease tensions and concerns. Once compensation is secured, our trust and deputyship team can also protect and help provide appropriate access to compensation funds, providing peace of mind whilst also ensuring that the young person’s needs are met. Life is indeed hard for disabled young people, as they come to terms with the challenges of adulthood, so it is immensely rewarding to see our young adult clients develop in confidence and independence as they overcome barriers to achieve their goals. If you have been seriously injured in an accident that was someone else’s fault and you would like to find out more about funded rehabilitation or making a claim, you can talk to one of our experienced solicitors, free and confidentially, by contacting us.
