Marketisation and personhood
Marketisation of care as a form of social inclusion
The marketisation of care for people living with disabilities through cash-for-care schemes such as insurances and plans and their association with social inclusion is a worldwide trend. Australia implemented the NDIS in 2013 (NDIS 2017). If it is determined that someone living with disabilities requires ‘reasonable and necessary supports' then through a market-based system with a lifetime approach, participants are involved in the decision-making about their funds and how they are spent (NDIS 2017: 12). Social inclusion is one of the indicators of success of the Scheme (NDIS 2017).
The Australian NDIS was partly inspired by the Canadian Registered Disability Savings Plan (RDSP), which was established in 2008 and is a ten-year long-term savings plan to help Canadians with disabilities and their families save for the future (Etmanski 2018; Government of Canada 2016; RDSP 2018). This Plan is a partnership between the Canadian government through bonds and grants and individuals through personal contributions (Government of Canada 2016). Canada recognises that social inclusion is affected by income amongst other determinants (Senate Canada 2013) and that the RDSPprovides long-term financial security for people and children living with disabilities (Government of Canada 2016).
Since 1997, people living with disabilities in the UK have been able to opt for direct payments, that is, cash in lieu of directly provided sendees (Dickinson and Glasby 2010). Currently in the UK, people living with disabilities develop a care plan, often with a social worker or care manager, which determines the value of their personalised (individualised) budget (NHS 2018). Each individual can be in charge of their budget and informed how the money is allocated, where it is directed, and how it is spent (NHS 2018). If included in the process, the social workers and others as part of their role promote social inclusion for each person (SCIE 2010).
Next we analyse cash-for-care schemes through the lived experience in Australia, the UK, and Canada. As the case studies show, specific features of the implementation of these schemes pose challenges for social inclusion. Discussion during and after the case studies reveals the operation of the different
Philosophy and ethics 211 ethical frameworks—utilitarianism, deontology, and virtue ethics—within scheme implementation.
Giselle’s story (Australia): the lived experience
I have a condition called ‘neurological non-specific', which results in chronic pain and tetraplegia, which has stabilised. The ability to walk to the park and breathe in the smells of fresh eucalyptus leaves is such a simple act that I never truly appreciated it. Mobility provides stimulation of the senses; it provides access to community and freedom! A wheelchair is my mobility, but after 20 years my secondhand electric wheelchair would suddenly slow to a crawl. This happened a few times whilst crossing the road, and understandably I no longer felt safe. Without mobility, during the day, my only human interaction was the cleaner; once a fortnight, occasionally friends popped round at the weekend. My partner came home each night, and I would listen eagerly to the mundane gossip of office life, but in reality, I was alone. I was 54, too young for day groups, but not disabled enough to join disability groups. With limited mobility, my world became smaller and smaller.
Thankfully, National Disability Insurance Scheme (NDIS) arrived, and I was finally able to get my chair serviced. The results came back: sad to say my 20-year-old electric wheelchair’s ’brain' was dying, and I needed a new chair urgently. The National Disability Insurance Agency (NDIA) was new, and this was my first experience of asking for help. I am a social worker and had worked in government for years, so I thought I had realistic expectations of a bureaucratic system. Sadly I found a massive disconnect between the NDIS governance statement on the individual and the NDIA's focus on a utilitarian model based on ‘insurance principles’. Somehow in this gap, the intent of the NDIS has been lost. I am a self-funded participant, and I am grateful that at least I have some control. Horror stories abound with others being lost in the system.
Initially I was part of the roll-out under the Australian Capital Territory (State) control of the NDIA, which allowed me a case manager via the Multiple Sclerosis (MS) Society. We worked out my plan and submitted it. Despite being prompted to ask for more assistance, my sole focus was a new chair so I could maintain my independence. I met my NDIA state plan coordinator, and she was wonderful. She realised that I was isolated and insisted that I expand my world by supporting my endeavours with my art work and church through paid support workers. Moreover, she understood and supported my request for a new chair. Plans under this system were flexible to the needs of the participant and could be changed as many times as needed throughout the year. But to me the most important part of my plan was approval to sort out a replacement chair. I thought that I could just pop out to the shops. Unfortunately, that is not how the system works.
In the midst of this process, the NDIA system changed over to federal control, and so did the philosophical position. The Australian Capital Territory model was person-focused (virtue ethics and deontological-based); the federal system was utilitarian. Suddenly I was a number and not a person. Everything became focusedon clinical reports and not my direct experience or needs. Moreover, my personal plan now could only be changed once a year! I had to accept the plan I was given (not necessarily agreed to by all parties). You can only ask for a change to the plan through the review process, but this takes a minimum of three months and is not flexible to any changing needs that often occur for clients. By now my wheelchair had died, and I was trapped at home. Under the new system, I no longer had a caseworker—I faced navigating this new system all through a call centre. Typically I felt that NDIA staff did not understand my needs: I felt they saw all disabled people as the same. The most insulting process I had to endure was phone calls checking my need for a wheelchairf!) despite NDIA having full medical records and occupational therapist (OT) reports.
I notified NDIA that my current wheelchair had died, and they logged the urgency for a replacement wheelchair on my record. I was told I could use any OT I wanted, but this proved to be very difficult because the system was not set up. I finally found a specialist OT, and after my initial assessment, she agreed I needed a wheelchair. But she only offered me a choice of two chairs from one Canadian company, and I felt neither chair was suitable for me to use on uneven ground. At this point, I took control! I am lucky that I am able to. I went online and found an Australian wheelchair company that met ALL my needs at nearly half the cost. However I needed another OT report to approve it.
Unfortunately, the saga did not stop there. Despite being logged as a critical need and having an OT report for the wheelchair, the bureaucracy would not approve the purchase of the wheelchair as it was four months before the end of my NDIA-approved plan. NDIA stated that I needed to wait until my next plan to ask for the money for the wheelchair! This process took 18 months in total from the first request!
During this process, nowhere was my voice heard. My disability needs were questioned, and my choices were ignored. The system made me feel disempowered. The NDIS core values focus on the individual; however, the managing body, NDIA, has focused on the financial cost over the individual by following a utilitarian model. The focus on a utilitarian model and following associated ‘insurance principles’ took away my voice, and I felt I had no rights. I felt so passionately about my loss of rights that I told my story at the NDIS Senate hearings in Canberra. Sadly, my story was not unique. The NDIA's response to the Senate hearing was a two-page letter of incomprehensible government jargon that even I (with years of government training) could not understand! It was clear they did not understand the participants' issues.
In reflecting upon Giselle’s story, although the NDIS offered an outcome that promised ongoing social inclusion—for Giselle, achieved through a new wheelchair— creating sustainable social inclusion requires the philosophy of the service to determine the operational mode. Giselle’s experience and the experience of many other people with disability has been that the socially inclusive philosophy of the NDIS was undermined by an operational mode incompatible with the stated philosophy (Parliament of Australia 2017).
Joan’s story (UK and USA): the lived experience
Twenty-five years ago, I was working as a community development worker in the UK when I was diagnosed with MS. As a professional, I had worked supporting people who lived with disabilities in communities known for experiencing disadvantage. But I had no personal understanding of how it felt to be ’characterised' as disabled or socially excluded. I was a new mum when I was first diagnosed, when it became clear that I could not sustain a job as well as looking after a young child. I was required to ’prove’ to the Benefits Agency that I was unable to contribute to the working conununity due to my incapacity. I received financial support, but little emotional or professional support was offered to me that would help me adapt to living with disability and make adjustments in order to continue my career. My experience is not uncommon because a person who is diagnosed with a condition such as MS is often viewed as a recipient of social care rather than someone who has a contribution to make. I was provided with information about support groups, but when I attended one, I found the emphasis was on accepting my incapacity. At that time, I was not ready to give up the possibility of having a career.
For me, one of the most difficult things about receiving disability support was the reassessment of my condition every three years, requiring me to explain each time the details of my inability to perform basic daily tasks. Whilst I recognise that assessment is necessary, the process was emotionally damaging in terms of my sense of well-being. I believe in the philosophy of universal healthcare provided by the National Health Sendee (NHS) and the provision of support for those living with disability. I do, however, believe that the implementation of this support sees recipients as noncontributing members of society and is focused more on economics (utilitarianism) than on social inclusion (deontology or virtue ethics).
Four years ago, I moved to the United States of America with my husband. I am fortunate to have excellent health insurance through my husband's work, for which we pay an insurance premium, and we also pay a fee for each treatment I receive. In contrast to my own experience, I volunteer in a community, where many have no insurance and so receive only emergency care. Social exclusion for those who live with disability in the USA can be a consequence of poverty. The implementation of the Patient Protection and Affordable Care Act has enabled many who live with disability to have fairer access to treatment, but the process of accessing disability benefits is complex and difficult to navigate, and it can take years to make a successful application. The Patient Protection and Affordable Care Act is also administered by states, with states able to opt out of implementation of the programme.
My experience of living with disability in the UK and the USA has enabled me to appreciate the strengths and weaknesses of cash-for-care provision in each country. The welfare system in the USA requires recipients to be active in seeking sendees and necessitates both medical and legal support to succeed in being awarded disability payments. My observation is that the system generally disadvantages those who do not have capacity or resources. In the UK, services and financial support for people with disabilities is more easily accessible, although I acknowledge that I have seen the system abused by people who have manipulated the rules for financial gain. My personal preference is for a system that provides universal health care as it protects those who have limited capacity, whether it is physical, mental, or educational.
In reviewing Joan's story, as her experience with universal health care in the UK in the 1990s showed, universal provision of care should also actively promote social inclusion—otherwise disability support will continue to be suboptimal.