With increasing numbers of young people with physical disabilities living into adulthood, the focus of health care has moved from survival to adequate treatment to support these young adults to make the transition into adulthood and become autonomous individuals who participate in society and manage their own life. A successful transition to adulthood may reduce lifelong dependency on others, unemployment, lack of achievement, and poor quality of life.[1-3]
In the process of transition to adulthood one of the challenges is to find employment. Employment provides financial independence and promotes psychological well-being, by structuring the day, providing social interaction and a meaningful contribution to society, and developing self-identity.[4, 5] Although data on the employment situation of people with physical disabilities are not always readily comparable across countries, an employment rate of about 30% is reported in both Europe and the USA.[6, 7] In the Netherlands, the employment rate among young adults (15–25y) with physical disabilities is 39% (26% and 12% in those with moderate and severe disabilities respectively).
Young adults with physical disabilities may experience substantial difficulties in the area of employment, such as being offered work that is physically too demanding, inadequate transportation facilities, inaccessibility of buildings and toilet space, lack of assistance with personal care, reluctant attitudes among employers, lack of support, and low self-esteem.[4, 5] It is reported that disabled young people would welcome support to help them find suitable employment. Currently, there is no evidence on the effectiveness interventions to improve work participation of this group of young adults.
Based on the literature,[9-11] we designed a multidisciplinary intervention aimed at improving the work participation of young adults with physical disabilities by combining rehabilitation and vocational services, with the aim of securing suitable employment that contributes to the young disabled adults' health and well-being. The present study describes the intervention and evaluates its feasibility in young adults with physical disabilities, addressing (1) implementation and the costs of the intervention and (2) preliminary effectiveness in terms of work participation and the occupational performance of the participants.
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Seventeen persons participated in the feasibility study, including one participant aged 28 years but who fulfilled other inclusion criteria. Three other participants in the intervention did not participate in the feasibility study: one did not complete education within 12 months and two did not provide informed consent.
Four participants dropped out of the intervention after the first group session because of severe health problems (n=2), personal problems (n=1), or an unknown reason (n=1); a fifth person dropped out after completing the group programme owing to non-compliance with agreements.
Table 1 presents the characteristics of the study sample (n=12; six males and six females with a median age of 21y 6mo). Eight out of 12 had a medium level of education and six persons were severely limited in physical functioning, of whom four were wheelchair dependent.
Table 1. Characteristics of the study participants (n=12)
|Median age in years (IQR, range)||21.5 (4.0; 19–28)|
|Chronic condition (n)|
|Spinal cord injury||1|
|Traumatic brain injury||2|
|Chronic obstructive pulmonary disease||1|
|Onset of chronic condition|
|Before age 12y||3|
|Between age 12y and 18y||1|
|After 18th birthday||2|
|Living with parent(s)||8|
|Living on their own||4|
|Level of educationa|| |
|Period looking for employment|
Implementation and costs of the intervention
The intervention was implemented in the outpatient rehabilitation clinic for young adults by starting two new groups per year. The diagnostically heterogeneous intervention groups facilitated the recruitment of participants, and were evaluated as beneficial by participants and professionals. Participants and professionals were very satisfied about the converging of rehabilitation and vocational services within the intervention, and the combination of a group and an individual programme. Participants rated (median [IQR]) the overall programme as 8.0 (1.0), the group programme as 7.3 (1.0), and the individual sessions as 8.8 (1.3). These ratings were not correlated with outcomes on work participation.
Using the per-protocol principle, costs were determined for 12 participants who completed the intervention. Table 2 gives an overview of the costs of the intervention per participant for the first year. Providing the group programme required a total of 150 hours for three groups for supervision and organization of the sessions by an occupational therapist and job coach (both 19h per group) and other experts (12h per group). In addition to individual pre- and post-intervention assessments (total 73h), six participants needed individual occupational therapy for a total of 103 hours. All participants required individual job coaching on job placement for 1 year (15–90h per person) and additional coaching on the job (about 40h a year). Drop-outs incurred few expenses, as they withdrew very early in the programme.
Table 2. Costs of the intervention per participant for the first year (n=12; euros, 2010)
|Costs||Total number of hours||Median (IQR) number of hours||Unit costs (euros, 2010)a||Median (IQR) costs per participant (euros, 2010)|
|Labour costs|| || || || ||2308.72 (949.29)|
|Consulting physician||Rehabilitation physician||12||1.00 (–)||88.06||88.06|
|Assessments (pre– post)||Occupational therapist||73||6.00 (–)||33.64||201.84|
|Group programmeb||Total||150|| || ||397.80|
|Occupational therapist||57||4.75 (–)||33.64|
|Job coach||57||4.75 (–)||30.85|
|Other experts||36||3.00 (–)||30.49|
|Individual job coaching||Job coach||520||45.00 (28.5)||30.85||1388.25 (879.23)|
|Individual occupational therapy||Occupational therapist||103||3.0 (12.0)||33.64||100.92 (403.68)|
|Overhead costs|| || || || ||819.60 (337.00)|
|Total costs|| || || || ||3128.32 (1286.30)|
Individual and group sessions required a total of 858 hours' labour over 1 year, or 72 hours per participant: 59 hours on individual and 13 hours on group sessions. Of these hours, 48 hours were charged to the Dutch Employee Benefits Insurance Authority (UWV) for job coaching, and 24 hours were at the expense of (usual) healthcare insurance.
Median (IQR) labour costs were €2308.72 (€949.29) per participant; median overhead costs were determined at €819.60, which summed to total median (IQR) costs of €3128.32 (€1286.30) for the intervention per participant for the first year. Median additional costs for job coaching until the 2-year follow-up were €1380 per participant, equivalent to a median of 33 hours, required by nine participants.
Preliminary effectiveness of the intervention
Before the intervention, two participants (2/12) were employed in unpaid or unsuitable employment. Post intervention, eight participants (8/12) were employed, meaning that a significantly higher proportion of young adults participated in employment compared to pre-intervention (McNemar test, p=0.031; Fig. 1). The ratio of those in paid employment to those in unpaid employment was 4/4. Participants worked 12 to 32 hours per week (median 18 h/wks), and had a broad variety of jobs, mainly low to medium level, corresponding to their educational level, e.g. office clerk, kitchen aid, museum guard, help-desk worker, graphic designer, and shop assistant.
Three persons did not achieve employment because they were undertaking a course of study to improve employment opportunities (n=1) or because increased health problems interfered with work performance (n=2), e.g. increased fatigue caused by multiple sclerosis.
At the 2-year follow-up, eight participants were employed, with a ratio of paid to unpaid employment of 5:3. Two individuals were no longer pursuing employment because working increased their health problems. At the 3-year follow-up seven participants were in paid employment; one other person was working unpaid. Two of four unemployed participants were looking for a job, one of them after being employed for 18 months. Six of eight participants who achieved employment post intervention were still employed at the 2-year follow-up (paid/unpaid: 4/2) and five were still employed at the 3-year follow-up (paid/unpaid: 5/0). Two of them had been looking for a job for more than 2 years before the intervention. These findings indicate that their work participation seems to be continuous and long term. Two participants no longer received a disability pension; for others, the disability pension was reduced substantially, as a supplement to their work income.
Work ability, work limitations, occupational performance, and health-related quality of life
Post intervention, employed participants showed moderate work ability with median scores on the WAI index of 31.0 (IQR 3.0). They were limited on the job for 20 to 33% of the time, according to their scores on the WLQ scales (see Table 3).
Table 3. Work ability, work limitations, occupational performance, and health-related quality of life pre and post intervention
| ||Pre intervention, median (IQR)||Post intervention, median (IQR)|
|Number of participants||12||11|
|WAI indexa||–||31.0 (3.0)|
|WLQa time management||–||25.0 (23.8)|
|WLQa physical demands||–||21.9 (17.1)|
|WLQa mental-interpersonal demands||–||19.4 (45.5)|
|WLQa output demands||–||20.0 (33.8|
|WLQa index||–||5.8 (11.3)|
|OPHI-II total score||70.5 (10.8)||82.0 (22.0)b|
|Occupational identity scale (OIS)||27.0 (7.0)||33.0 (9.0)b|
|Occupational competence scale (OCS)||22.5 (3.8)||24.0 (5.0)b|
|Occupational settings scale (OSS)||22.0 (4.5)||30.0 (7.0)|
|COPM performance subscale||4.9 (2.5)||7.0 (2.4)b|
|Performance productivity (n=7)||5.5 (4.5)||7.0 (3.5)|
|Performance self-care (n=6)||5.0 (2.5)||6.5 (2.2)|
|Performance leisure (n=5)||5.0 (2.5)||7.0 (2.5)|
|COPM satisfaction subscale||3.6 (3.3)||7.0 (2.5)b|
|Satisfaction productivity (n=7)||5.0 (4.5)||7.0 (3.0)|
|Satisfaction self-care (n=6)||3.8 (3.9)||5.8 (2.4)|
|Satisfaction leisure (n=5)||4.0 (2.5)||7.0 (3.5)|
|Physical component summary (PCS)||33.7 (19.3)||37.8 (13.3)|
|Mental component summary (MCS)||50.2 (21.3)||49.5 (13.6)|
Participants showed improved occupational performance, as demonstrated by a significant improvement on OPHI-II total scores (Wilcoxon signed-rank test: z=−2.6; p=0.009), OPHI-II scales for occupational identity (z=−2.9; p=0.003), and occupational competence (z=−2.4; p=0.02), COPM Performance scores (z=−2.3; p = 0.02), and COPM Satisfaction scores (z=−2.3; p=0.02).
Higher occupational identity and occupational competence scores indicated that participants displayed more positive values and interests and had a more positive image of the future, as well as an increased ability to display productive and satisfying occupational behaviour.
Improved occupational performance and satisfaction with performance of prioritized issues (COPM) addressed issues in all three areas of occupational performance – productivity, self-care, and leisure. Four participants achieved a change of two points or more on performance scores, indicating clinically important change, and seven achieved a change of two or more points on satisfaction scores.
The health-related quality of life of participants did not change after the intervention, based on component summary scores on the physical and mental health domains of the SF-36; this was confirmed for employed participants in a sub-analysis. Post-intervention physical health of participants was significantly worse compared with an age-appropriate Dutch reference sample (20–29y; 37.8 vs 53.1; one-sample Wilcoxon signed rank test; p=0.006), indicating that the physical health status of participants was poor.
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It appeared feasible to implement a 1-year multidisciplinary intervention to improve the work participation of young adults with physical disabilities in an outpatient rehabilitation clinic for young adults. Twice a year a new group starts the intervention, combining rehabilitation and vocational services in a group programme and individual coaching. The total median costs of €3128 per participant for the first year, and median additional costs of €1380 until the 2-year follow-up, are lower than the standard amount for an individual reintegration agreement (unemployment assistance/benefit) of €5000 (2008–2010) and are considered reasonable, given the results. Since participants are young, the financial benefits of paid employment may have long-lasting effects, both increasing their autonomy and decreasing the financial burden for society. Preliminary results show that work participation improved substantially after the intervention. In addition to the primary outcome on work participation, we explored some other aspects of employment, such as work ability and work limitations as well as other domains of occupational performance (self-care and leisure). In the absence of a control group, however, we do not know how work participation would have developed without the intervention, considering that young adults might be expected to gain employment as an age-appropriate transition. A further limitation of this study is the small sample size.
Most participants in this study had moderate or severe limitations of physical functioning and some also had a low educational level, both of which are considered to be factors hindering the chance of employment for young disabled individuals.[5, 24] Despite their severe physical limitations, those achieving employment showed moderate work ability and work limitations, indicating that their work tasks and conditions matched their abilities and were not physically too demanding, according to their scores on the WLQ Physical Demands scale. The convergence of rehabilitation, providing insight in their physical skills and capabilities, and job coaching, providing suitable employment positions and on-the-job training, might have contributed to achieving suitable employment. Thus, a good fit between person (abilities and needs) and environment (job demands and support) seemed to be reached.
Post intervention, improved occupational performance and satisfaction with performance of prioritized issues (COPM) were not restricted to the area of productivity, but also addressed self-care and leisure activities. The goal of employment seemed to motivate participants to resolve problems in other areas which they previously disregarded or refused to address, e.g. ergonomic adjustments of their wheelchair, independent toilet use, or using public transport. Thus, employment can be an important outcome for young adults, and may encourage them to improve their occupational performance in other areas. These results will have to be interpreted with caution, since the number of analyses carried out was large relative to the small sample size. However, the findings are in line with the broad integrated approach of the intervention, and are consistent with others reporting that self-care independence and mobility might be important factors for enabling work participation among young adults with physical disabilities.[4, 24]
To our knowledge, there is no literature on the effectiveness of vocational interventions specifically targeting young adults with physical disabilities. Considering that 25% of the young disabled people receiving disability employment benefit in the Netherlands (‘Wajong’) achieved employment in 2008, and that the Dutch Employee Benefits Insurance Authority (UWV) considers a rate of 25% achieving paid employment as an indicator of successful job coaching in this population, we consider a 34% paid employment rate after 1 year in our sample as a successful result. The long-term results, indicating that employment continued in most cases, and that the number in paid employment further increased, seem to be favourable. A high dropout rate of the intervention should be anticipated, which might be inevitable in the target population given the high burden of their chronic condition and a lower compliance in this age group.
In conclusion, the feasibility and preliminary effectiveness of the intervention, combining rehabilitation and vocational services, are promising. Post intervention, a substantial proportion of the young adults was employed, and they seemed to have achieved suitable and continuous employment, and participants showed improved occupational performance. The goal of employment and the broad integrated approach of the intervention seemed to support young adults to resolve issues in work, as well as in self-care and leisure. Future research in a larger sample and a controlled study design will add to the evidence for the effectiveness of the intervention.
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This study was supported by the Children′s Fund Adriaanstichting (KFA) and the Johanna Children's Fund (JKF; grant number 2005/0087-952), VSB Fund (grant number 20051606) and the Dutch Employee Benefits Insurance Authority (UWV) (grant number IR/06svg01). The funders had no involvement in study design, data collection, data analysis, manuscript preparation, or publication decisions.
The authors thank all the participating young adults. We thank Monique Floothuis and Natascha van Schaardenburgh for their contribution to the implementation of the intervention and data collection, Chris Kuiper for introducing the intervention to us, and Siok Swan Tan for her advice on cost calculations. We thank Gary Kielhofner for the inspiring communication and consultation in designing the intervention and the evaluation study, and dedicate this paper to his memory.