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Who’s Driving the NDIS –

Autonomous car or skilful driver?

Professor Kathy Boxall, Edith Cowan University, Bunbury

k.boxall@ecu.edu.au

Abstract

Who’s Driving the NDIS – Autonomous car or skilful driver?

This presentation will discuss choice, control and personalised services in the lives of people with intellectual disabilities, raising questions about who or what is driving current agendas. To do this, it will place the development of the NDIS in Australia and WA in the context of personalisation developments internationally. It will also discuss an approach to researching the voices and choices of people with intellectual disabilities who don’t use words. The presentation will draw on research undertaken in one local authority area in the UK during the early stages of personalisation and will highlight ways in which the personalisation agenda was being driven by a rhetoric of choice which left little space for the voices and choices of the people with intellectual disabilities who participated in the research.

Who’s driving the NDIS?

• Autonomous cars

• Personalisation

• Researching voices and choices

• Choice, control and politics

• Skilful driving

Autonomous car

An autonomous car, also known as an uncrewed

vehicle, driverless car, self-driving car and robotic car,

is an autonomous vehicle capable of fulfilling the

main transportation capabilities of a traditional car.

As an autonomous vehicle, it is capable of sensing its

environment and navigating without human input.

https://en.wikipedia.org/wiki/Autonomous_car

Personalisation

• Personalisation means ‘starting with the person as an individual with strengths, preferences and aspirations and putting them at the centre of the process of identifying their needs and making choices about how and when they are supported to live their lives’.

• ‘It requires a significant transformation of adult social care so that all systems, processes, staff and services are geared up to put people first’ (Carr 2010, p.3).

• In the UK, that transformation process is premised on the allocation of individualised funding – personal budgets – to eligible service users.

A UK Vision for adult social care

• In 2010 the UK Coalition Government’s Vision for Adult Social Care ‘challenged councils to provide personal budgets, preferably as direct payments, to everyone eligible within the next two years’ (DH 2010a, p4).

But

• Department of Health (DH 2010b, p21) Fair Access to Care Services (FACS) guidance was clear that:

‘… councils should prioritise needs that have immediate and longer-term critical consequences for independence and well-being ahead of needs with substantial consequences. Similarly, needs that have substantial consequences should be placed before needs with moderate consequences and so on’ (DH 2010b, p22).

UK Policy and Practice

• The everyday lives of many people with intellectual disabilities do not reflect the policy rhetoric.

• Where people qualify for personal budgets, these can be used to help remove barriers and facilitate people’s inclusion in the mainstream – some very positive stories.

• But for people who fail to meet FACS criteria, it may be a different story.

• There are also concerns about declining standards in services and supports where people do qualify (Simpson and Price 2010).

NDIS

Parallels between personalisation in the UK and the Australian NDIS, but much less direct employment by service users (Cortis et al 2013).

Research in WA has raised concerns that increasing dependence on government funding is undermining the capacity of the NfP sector to critique government.

‘notions of care and social justice are also seemingly being pushed aside in the rush to embrace performativity, self-monitoring, target-setting and outcome measures’ (Fitzgerald et al 2014, p525).

International developments

• Evidence of the development of personalisation policy internationally.

• Italy, Austria, France, the Netherlands, Belgium, Sweden, US, Canada … etc

• ‘Some schemes are primarily aimed at promoting independent living, while others are designed to improve the family’s capacity to take on caring responsibilities, and most share the goal of cost reduction’ (Carr 2011, p11,emphasis added).

Costs, needs and stories

• ‘the key motivation for welfare reform and the introduction of cash allowance schemes across countries is to respond to the increasing need for long term-care and support by an ageing population’ (Carr 2011, p12, emphasis added).

• In the UK, personalisation ideals were ‘sold’ using ‘feel good’ stories of individual choice and control, which diverted attention from structural issues and problems with the wholesale implementation of personalisation policy (Boxall et al 2009).

Southside Hostels

• Three residential hostels for people with intellectual disabilities run by Southside Council

• Series of consultancy/research projects from 2002 to 2005 (In Control pilot was in 2003)

• Initially, residents remained in the hostels but we had to ‘separate’ their needs (due to changes to funding streams)

• Housing needs – eg tenancy agreements

• Support needs – ‘supports and prompts’

• Personal care needs

Housing preferences

All three hostels were scheduled for closure – Southside Council was late in closing its hostels

40 residents in all – 16 with profound intellectual and multiple disabilities who did not use speech.

My task was to research the residents’ future housing preferences – ‘find out if they want to live in bungalow or a flat and which area of Southside they would like to live in’.

Southside Council’s attempt to consult with the ‘profoundly disabled’ residents of their hostels was innovative and unusual.

Hostel closures

• Funding disincentives to councils running their own

residential provision

• Southside had already closed an elderly person’s home,

without prior consultation with the residents

• This had been challenged by relatives through the

courts and Southside Council had been admonished –

made national headlines

• They wanted to get it right this time

Sharing accommodation

• It became clear that the people residents shared with would

be as important, if not more important, than the sort of

property they lived in, or where it was.

• Where people had relatives, they visited infrequently.

• Residents’ relationships with staff were very important.

• Staff had clear ideas about which residents should share but

these ideas were sometimes based on combinations which

would be easier for staff to manage.

• I had to find a way to work with staff to work out people’s

preferences where they couldn’t tell me themselves.

People who didn’t use words

• ‘First person questionnaires’ followed by interviews

with ‘proxies’

• We spent a lot of time working out people’s sharing

preferences.

Staff: ‘Fred wouldn’t want to share with Brian,

because they don’t get on.’

KB: ‘Is that what you think, or is it what you think Fred

would want?’

Staff: ‘Well, Fred likes winding-up Brian, so I suppose

he’d say he wants to share with him.’

Choice and control

We arrived at groupings which appeared to satisfy individual residents’ sharing preferences – groups of one, two or three people.

Some groups included residents from more than one hostel and involved friendships developed at day centres.

These groupings were later ruled out by the Social Services Committee due to financial constraints and a decision was taken to close the hostels ‘one at a time.’

We then had to reconfigure the groupings, overruling residents’ preferences, so that they would be sharing in groups of three or more!

Control

The Housing Preferences project effectively provided a

veneer of choice and control which satisfied the local

authority’s obligations to consult but had little impact on the

lives of individual residents.

Despite our apparent ‘success’ in identifying the housing

preferences of all forty hostel residents, I felt very

uncomfortable about the eventual outcome of the research

and was concerned that we had colluded with, rather

than challenged, an unspoken service agenda to retain

control over residents’ lives.

European welfare states

Ranci and Pavolini (2015) analysed changes to long term care provision in eight European welfare states over the last two decades (early 1990s to early 2010s).

• Sweden

• Denmark

• England

• Germany

• France

• Italy

• Spain

• Czech Republic

Changes

• In originally universalistic models (eg Sweden and England)

there were changes to assessment criteria, with greater

emphasis being placed on in-home care.

• In originally residual models (eg Italy and Spain), universalism

was introduced as a social right, but often not provided to all

people in need.

‘Restricted universalism’

Ranci and Pavolini (2015) argue that a new form of ‘restricted universalism’, has become dominant in European welfare states:

– ‘all people in need are explicitly entitled to access the same [long-term care] services, but with a range of restrictions in the provision, quality or access to services (p13, emphasis in original).

Many European countries have also seen deterioration in ‘the practical and organisational conditions of care’ and in the working conditions of care workers.

Autonomous cars and skilful drivers

‘Self-driving cars have the potential to bring significant benefits to drivers and society at large. However, all envisaged scenarios are predicted to increase the risk of motion sickness. This will negatively affect user acceptance and uptake and hence negate the benefits of this technology’ (Diels and Bos, 2015 , p14).

Skilful car drivers would reduce the incidence of

motion sickness, but I wish to suggest another

solution:

We get on our bikes

Autonomous cars would avoid bicycles

References

• Boxall, K., Dowson, S., & Beresford, P. (2009). Selling individual budgets, choice and control: local and global

influences on UK social care policy for people with learning difficulties. Policy & politics, 37(4), 499-515.

• Carr, S. (2010) Personalisation: A rough guide, London, Social Care Institute for Excellence.

• Carr, S. (2011). Personal budgets and international contexts: Lessons from home and abroad. Journal of Care

Services Management, 5(1), 9-22.

• Cortis, N., Meagher, G., Chan, S., Davidson, B., & Fattore, T. (2013). Building an Industry of Choice: Service

Quality, Workforce Capacity and Consumer-Centred Funding in Disability Care, Sydney, Social Policy Research

Centre, University of New South Wales.

• DH (2010a) A Vision for Adult Social Care: Capable communities and active citizens, London, Department of

Health.

• DH (2010b) Prioritising need in the context of Putting People First: A whole system approach to eligibility for

social care – Guidance on Eligibility Criteria for Adult Social Care, England 2010, London, Department of Health

• Diels, C., & Bos, J. E. (2015) User interface considerations to prevent self-driving carsickness., Adjunct

Proceedings of the 7th International Conference on Automotive User Interfaces and Interactive Vehicular

Applications (pp. 14-19).

• Fitzgerald, S., Rainnie, A., Goods, C., & Morris, L. (2014). The restructuring of WA human services and its

implications for the not-for-profit sector. Australian Journal of Social Issues, 49(4), 509.

• Ranci, C., & Pavolini, E. (2015). Not all that glitters is gold: Long-term care reforms in the last two decades in

Europe. Journal of European Social Policy, 0958928715588704.

• Simpson, G. and Price, V. (2010) From inclusion to exclusion: some unintended consequences of Valuing People,

British Journal of Learning Disabilities, 38(3), pp180-186.

Images from:

http://www.slashgear.com/i-still-trust-autonomous-cars-more-

than-i-trust-you-12383241/

http://deliberatelife.co/blog/the-story-behind-the-wheel/2015

http://www.betterbybicycle.com/2013/12/sportrecreational-cycling-

vs.html