Social, Educational and Economic Participation and the NDIS – Evidence from In-depth Qualitative Interviews
7.5.1 Social, educational and economic participation of NDIS participants
There was evidence of increased social participation of NDIS participants in wave 1. This continued in wave 2 with most NDIS participants further increasing their ability to take part in aspects of daily life that had been difficult for them before the NDIS. Many NDIS participants were now able to participate in activities independently (i.e. without a family member), have access to support when needed, follow interests and social activities that had previously been inaccessible, and visit friends and family or having people to stay.
Taking part in social activities had additional benefits for some participants as these activities, were helping them to learn and develop new social and communication skills.
I’ve probably become more sociable and I’ve made new friends that I wouldn’t have because I was up at [Name of provider]. I’ve become more confident with my money skills, my life skills, just become happier. (E02 PWD&C W2)
It’s good now. I’ve got a camp I can look forward to. Instead of me sitting in a chair thinking ‘oh woe is me, nothing nice ever happens’. (B16 PWD W2)
However, it was notable that for participants with mental health problems, intellectual disabilities or with Autism Spectrum Disorder, impacts related to social participation were more mixed and less pronounced. Concerns were raised by these respondents about the difficulties they had in participating socially and developing friendships; this had not improved with the NDIS. Others in this participant group observed that whilst they may have been able to engage more in social activities, these were often with people with similar types of issues (for example, others with mental health issues) rather than in more ‘mainstream’ activities or in the general community.
I have funding for a mental health support service activity but what I found is that it’s great if you go because at least you’re accepted and you can share about mental illness but if you’re wanting to recover and reintegrate into the community it doesn’t really meet those needs, for me it doesn’t meet those needs. (B05 PWD W2)
Unlike social participation, there were few instances of reported increased participation in paid or unpaid work. Only a small number of NDIS participants were engaged in ongoing (mostly supported) employment, ranging from full-time to part-time hours in wave 1. While there was an increase in participation in employment related activities including volunteer work, work experience, supported employment and paid work by wave 2, this was limited with only a few NDIS participants reported undertaking these activities.
Several respondents were clearly aware that their opportunities for participation in paid employment were currently too limited to be actively pursued.
The bottom line is, my goal can be employment until the cows come home. Getting someone to employ you is absolutely another matter, at my age with my disabilities, whatever. So I do not want to be locked into having to succeed at that, no matter how much I might try. (C02 W2)
NDIS participants and NDIA staff argued that more needed to be done to develop effective guidance, supports and linkages to employers in order to open up labour market opportunities for people with disability.
7.5.2 Social, educational and economic participation of family member and or carer
Easing the care burden on carers improved their social participation as it allowed them to be involved in other valued activities such as social activities and quality time with other family members that would previously not been possible. Examples given included a carer who was able to ‘join a gym and get a bit more on a healthy lifestyle’ (C01C W2).
Caring responsibilities impacted on the carers’ ability to take part in paid work and on career pathways more generally. Many parents/carers who were interviewed were unable to participate in paid work because of care commitments. Several respondents noted that they had given up their careers as a result of care responsibilities, which had consequently impacted on their wellbeing and self-worth. Others felt their time out of work created further obstacles to returning to employment. For those that were in paid employment, many worked part-time and all noted caring responsibilities to have impacted on their work arrangements (i.e. leading them to work out-of-hours or on weekends, working from home, or being unable to pick up additional hours of work).
There were a few examples of carers increasing their working hours, or pursuing employment activities in wave 2 because they now had a little more free time as a result of their child participating in more activities than previously.
I need support to go to work which I do get, so thanks to them I get care for him when I need to go for work, so that makes me feel relaxed that he is being taken care of while I am going to work. (E10C W2)
Some respondents intended to use their experiences with the NDIA to change career pathways - several had started businesses to provide advocacy and case management (lead agent) services for other parents.
One respondent raised a matter of concern new to wave 2, where they felt that capping NDIS funded support to 30 hours per week restricted the family’s participation in the workforce, as flexibility was required to work around the hours their child was cared for.
7.5.3 Social, educational and economic participation through the eyes of the service provider
As was the case in wave 1, disability service providers continued to report varied impacts of the NDIS on the economic and social participation of people with disability and their families and/or carers. Some providers cited examples of increased social participation while others reported that only very limited supports were being provided in NDIS plans to facilitate social participation.
Assistance for community access, the NDIA is far more frequently approving that compared to in the first year, so I guess a sign of they have listened to the participant community on that. (A01S W2)
As in wave 1, service providers were still more likely to observe increased social participation amongst NDIS participants than increased economic participation. Evidence of the positive impact of the NDIS on the economic participation of participants and their family members or carers remained limited in wave 2.
Several disability service providers gave examples of how the NDIS was supporting economic participation for some families or carers of NDIS participants. Greater levels of funding for supports for these NDIS participants meant family members were freer to pursue or increase employment. The extension of hours of operation of day services that was attributed to the NDIS, also freed up family members to pursue or increase employment.
Probably where we’re seeing the economic participation would be around family members, carers, returning to work… There’s respite… there’s individual support within a community or in-home support or there’s support for their family member or loved one to be able to get up in the morning around their personal care requirements which is enabling them to return to work. (B03S W2)
7.5.4 Social, educational and economic participation through the eyes of NDIA staff
In wave 2, NDIA staff advised that while social participation had increased for people with disability under the NDIS, it would take time before greater economic participation was evident. NDIA staff considered that levels of inclusivity in the community needed to develop to allow people with disability to be accepted and integrated, particularly into mainstream activities.
NDIA staff reported mixed evidence of increased economic participation amongst NDIS participants. Those cited were presented as individual examples rather than any evidence of systemic change. Increased economic participation amongst people with disability was considered a long term process, with time needed to develop job-readiness skills, create programs to support both participants and employers, and to change cultural beliefs about employability and opportunities for employment for people with disability. There was some evidence of transition to employment programs beginning in several trial sites.
In wave 2, examples were frequently cited of the NDIS creating opportunities for families or carers to return to work or increase their hours of employment. This is despite the fact that planning meetings still focused almost exclusively on the needs and aspirations of people with disability, with those of carers yet to be explicitly addressed.