Major life areas: Education, training and employment

In relation to education, training and employment, a recent Australian case-control study (Reddihough et al., 2013) explored outcomes of 20-30 year olds with CP compared to an age-matched population sample. Young adults with CP had significantly lower levels of educational attainment, with only 50% having completed secondary education compared to 80% of the controls, and 36% having completed tertiary education compared with 53% of controls. They were also much more likely to be unemployed, with only 36.3% working compared to 80% of the control group (Reddihough et al., 2013). The employment rate of people with disability as a whole in Australia currently sits 30% lower than that of people without disability. Statistics from the year 2015 identified that just over half (53.4%) of people with disability were participating in the labour force compared to 83.2%

of people without disability (Australian Bureau of Statistics, 2016). People with severe or profound disabilities are at the greatest risk of being unemployed, with only 25% in the labour force. This figure is lower than when the survey was last conducted in 2012, when 29.7% of this group were working. Even those Australians with disability who are working are much more likely to be working part-time and to be underemployed than people without disability (Australian Bureau of Statistics, 2016). Australia is performing poorly in comparison to other Organisation for Economic Cooperation and Development (OECD) countries in this regard, currently ranked 21/29 in relation to employment rates of people with disability (OECD, 2010).

International research has identified similar trends in education and employment restrictions for young adults with CP (Benner, Hilberink, Veenis, van der Slot, & Roebroeck, 2017; Darrah, Magill-Evans, Galambos, & Nickerson, 2008; Huang, Wang, & Chan, 2013; Sandstrom et al., 2004; Verhoef, Bramsen, Miedema, Stam, & Roebroeck, 2014). A meta-analysis including data from 89,943 emerging and young adults with a range of chronic illnesses and disabilities found that the rate of completing higher education was reduced by 23% and the employment rate by 25% in comparison to people without disability. Young people with neurological disabilities including CP or sensory disabilities, and those with highly visible disabilities, had the lowest rates of success (Pinquart, 2014).

Participants in an Italian study of 72 adults with CP had a low level of education, with only seven having attended university or college. Unemployment was also high; 66.1% were not working and 16.1% worked in supported employment. Only 17.7% had achieved competitive employment (Bottos et al., 2001). A Danish Cerebral Palsy Register study of 819 participants aged 21-25 identified that significantly less young people with CP versus a control group of people without disability had achieved a vocational (17% v 38%) or tertiary (9% v 20%) qualification. Employment outcomes were similarly disappointing, with only 29% of participants being competitively employed in comparison to 82% of controls (Michelsen, Uldall, Kejs, & Madsen, 2005). Canadian research has identified similar poor outcomes,

with only 27% of 70 23-33 year olds with CP having attended any college or university, 35.7% working, and only 20% working full-time (Young et al., 2006). A more recent Canadian study with youth aged 16-19 with physical disability found similar results, with only 35.5% of youth with disability having a current job or previous work experience compared to 70.5% of their peers (Lindsay, McDougall, Menna-Dack, Sanford, & Adams, 2015). A recent review identified that even participation in volunteer work is difficult, with young people with disability facing challenges finding accessible opportunities, suitable transport options and welcoming supervisors (Lindsay, 2016b). This is of concern given the links between volunteer work and transition to paid employment, increased community engagement, improved social and work skills and self-confidence (Lindsay, 2016b).

Challenges in relation to education and employment have also been noted in previous qualitative research. In a UK study with seventy-two 21-35 year olds with a range of disabilities, employment rates were low and those who were working were mostly in poorly paid jobs (Hendey & Pascall, 2001). Some participants avoided looking for work for fear of losing their benefits. Barriers to employment identified by participants included a “hostile” labour market, discriminatory employers, limited support for personal assistance and difficulty earning enough to cover the additional support costs required (Hendey & Pascall, 2001, p. 14). A recent National inquiry by the Australian Human Rights Commission (2016) identified similar barriers to employment through its 120 public consultations and 342 submissions. The inquiry identified employment discrimination against people with disability as “ongoing and systemic” and concluded that discrimination results from negative assumptions around the capacity of people with disability, attitudes and stereotypes, unfounded beliefs that people with disability present a significant work health and safety risk, a lack of knowledge and skills to facilitate inclusive workplaces, and low levels of awareness of supports available (Australian Human Rights Commission, 2016, p. 12). In 2014-15, 41% of disability discrimination complaints received by the Australian Human Rights Commission were in relation to employment discrimination (Australian Human Rights Commission, 2016).

It is important, and disappointing, to note that participation in employment of adults with CP does not appear to have improved to any great extent in recent decades. American research published in 1995 with 117 adults with CP aged 17-51 identified that fewer than half (48.7%) were employed (O'Grady, Crain, & Kohn, 1995). Over twenty years ago, these authors hoped that increased educational opportunities, assistive technology and improved legal rights would lead to improved participation of adults with CP (O'Grady et al., 1995). Unfortunately, outcomes remain poor and much more needs to be done to facilitate improved participation and success in education and employment. Australian statistics present similar worrying findings, with the overall employment rate of people with disability having changed very little in over 20 years (Australian Human Rights Commission, 2016). Of particular concern, as previously noted, is that the employment rate of people with severe and profound disability actually decreased by nearly five percentage points between 2012 and 2015 (Australian Bureau of Statistics, 2016).

Improving outcomes in this area is vital because employment has the capacity to improve social inclusion, mental health, self-esteem, and quality of life, and to foster a sense of purpose (Cocks et al., 2015; Merton & Bateman, 2007). In comparison, unemployment leads to poor outcomes including poverty, distress, social exclusion and anxiety (Australian Council of Social Service, 2014). People with disabilities face even greater disadvantage than other people experiencing unemployment (Cocks et al., 2015). Recent Australian research has demonstrated that 20-30 year olds with CP have poorer quality of life in relation to performance in productive roles such as employment, than their peers without disability (Jiang et al., 2016). The worst outcomes are currently seen for young people with low levels of education, intellectual disability, bilateral CP, and more severe physical limitations (GMFCS IV and V) (Benner, Hilberink, Veenis, van der Slot, et al., 2017; Bottos et al., 2001; Darrah et al., 2008; Huang, Wang, et al., 2013; Lindsay, 2011a; Michelsen et al., 2005; Van Naarden Braun et al., 2005). Those with low incomes and those living in rural areas also face additional disadvantage (Lindsay, 2011a). A recent International systematic review has also identified concerning findings in

relation to gender, with the majority of research reviewed finding employment outcomes are worse for young women than men. Contributing factors identified include lowered expectations, parental overprotectiveness and poorer self- confidence (Lindsay, Cagliostro, Albarico, Srikanthan, & Mortaji, 2017)

Despite the additional challenges identified for people with more severe physical limitations, intellectual disability, and young women, even emerging adults with CP GMFCS Level I and no intellectual disability have significantly lower levels of employment than their peers without disability (Donkervoort et al., 2009). Research in the UK has shown that young people with disability at age 16 have similar aspirations in relation to expected level of qualifications, attainment of a professional occupation, and pay rates, as their peers without disability. However by age 26, their outcomes fall well behind their peers (Burchardt, 2005). This discrepancy between aspirations and outcomes is further evidence of the need for improvements in this area.

In summary, successful transitions reflect those that enable a young person to engage in adult roles which align with their goals, strengths, and needs (King, Baldwin, Currie, & Evans, 2005). It is clear from the above discussion that the participation and engagement of emerging adults with CP is often limited in a range of life areas in comparison to that of young people without disability. Of additional concern is that current evidence suggests that participation has not improved in recent years, and that young people do desire a greater level of participation (Meulenkamp, Cardol, van der Hoek, Francke, & Rijken, 2013). Despite this evidence, in-depth personal accounts of experiences have rarely been told, and the current study contributes to this gap in knowledge.

It is now widely recognised that a person’s impairment is only one of a number of factors influencing their experiences. Important interactions exist between a person’s impairment and their environment, and a range of personal factors also influence experience. All areas must be addressed in order to facilitate improved participation of emerging adults with CP (Stewart et al., 2013). The current state of

knowledge about environmental and personal factors influencing experience is now explored.