I am writing primarily on behalf of my 26 year old son who is mad keen to work. He wants to meet and present to groups of students, medical staff, bureaucrats, sporting organisations etc about inclusivity (a much misused term, often attributed to segregated activities), communication rights and advocacy. One of the biggest barriers he faces in doing this is the ongoing shortage of disability support workers (resulting in frequent use of relief staff who are insufficiently trained in supporting his complex communication needs.) Since participating in a few codesign projects this past year, he has been actively sought out for codesign and coresearcher jobs that suit his fluctuating health needs (one off jobs, series of monthly meetings etc) and his passions and lived experience. However, he has regrettably been forced to turn a number of these down because he doesn’t have a support worker available to set up his eye gaze technology and to access his partner assisted PODD communication AAC at work. More often, the challenge is that he has insufficient access to trained smart communication partners before the job (meeting/event) to prepare adequately for the job. For each job he needs information and questions in advance so he has time (hours and hours) to use his AAC to prepare contributions/responses that his eye gaze technology will say aloud for him. He is highly motivated to work, he is proud of the difference his voice has made and is proud to be earning some income. It is heartbreaking for him to have for the first time, at last, in his 20s, access to AAC that enables him to communicate, yet be unable to have consistent support to use it so that he can work. He is fortunate to have unpaid people around him who know him and his AAC well who have been filling in gaps in staffing on a short term basis over the past six months, but this has not been sustainable and so now he has to turn jobs down. Access to appropriate supports is the no 1 barrier to his participation in the workforce.
Other barriers include a lack of appropriate toileting facilities (Changing Places toilets), ongoing difficulty in accessing buildings for work (getting into them, and then sufficient turning space for a power chair and tray with eye gaze mount to safely circulate), community assumptions that because he doesn’t speak he is unintelligent and has nothing to say, community unfamiliarity with, and inexperience of, using basic AAC to communicate with others. For him to work in the mainstream workforce he needs physical access and toileting access, access to affordable transport for him in his wheelchair, colleagues who get some basic training in what complex communication needs are and are not, and basic training in how to communicate with each other (including close observation of his natural behaviours and basic understanding of how to use his PODD). A well trained support worker could assist our son to provide basic training but he would need funding for this in his NDIS plan. Use of zoom as an option to participate in paid work is beneficial, but is not suitable as the only mode of work as the connections and relationships built are not the same as in person work. An important part of working for our son is the human connection and opportunity to meet new people, some of whom might become friends or mentors. Another challenge is that when organisations invite my son to do work for them, many still view his work as voluntary and free of charge. It takes great courage for him to ask for payment, even though the organisation may later agrees to a modest payment. E.g. a local company that wanted him to model for a photo shoot using their custom built AT, but didn’t offer a fee; an advocacy group that wanted him to be in a short film about how he lives his life but expected him to do this for free even though everyone else involved would be paid and filming alone might take days. He has very specific knowledge, understandings and experiences of a person with significant multiple disabilities that companies, organisations highly value (they tell him that they are “blown away ” by his insights, how much impact his short presentation had etc). The mindset is slowly changing with nominal payment being offered for co-design jobs. However, there is still a broad expectation that he should do work for free, or for a token small gift (like a gift voucher for being an in person model at professional development training session for a couple of hours or more plus travel time: ironically, his therapists charge him from $159-200/hr travel time.)
As his mother I have been invited to do many presentations etc by organisations and agencies in the disability sector with the same expectation of no pay. e.g. I was asked to speak to health professionals over SIX 2 hour sessions but not offered any pay. When I said I would need to charge a fee I was told there wasn’t money for that. So often we are the only people in the room NOT being paid, We are invited not just because we are a person with disability/parent, but because we also bring to the table professional skills on par with the other professiinals in the room: skills that were recognised and paid well before the impact of disability, insufficient paid supports and caring responsibilities pushed us out of our professions.
As the parent of a young man with severe multiple disabilities, and disability of my own, other barriers I have found include a lack of understanding and support in some workplaces of my responsibilities as a family carer, inflexible working hours and/or locations, dangerous and unhelpful assumptions about my capacity to work. A key overarching position of the new disability employment support model needs to be that everyone can work, everyone can be paid fairly (none of those euphemistically named ADEs) and that everyone’s work has value. Microenterprises for people with disabilities are making enormous inroads to individualised work options for disabled peoole: they are game changers, but they are not the whole solution. Disabled people need to be working throughout society, in small business, big business, corporates, givernments and more. Attitudes towards people with disability and disability itself need to change across the community. We are proud to be disabled.