Personalisation and austerity politics

Contemporary disability policy has become increasingly internationalised, with the 2007 UN Convention on the Rights of Persons with Disabilities (CRPD) powerfully articulating and reinforcing the disability community's new set of values associated with personalisation. The philosophy behind this concept can be found in particular in Article 19, which demands that services should be closely tied to the achievement of choice and independence as well as community involvement. Accordingly, the emphasis is not on services per se, but on support to enable active and meaningful lives in the community.

While the author recognises these wider aspects of personalisation, in each of the jurisdictions examined much of the reform effort has become focused on the process of individualising funding, despite policy documents expressing wider aspirations to reform. In the US, SDS has been achieved through various demonstration projects (pilots) since 1998 from trusts such as the Robert Johnson Foundation and co-funded by the US Department of Health and Human Services. The Medicaid Cash and Counselling programme is one variant of this, where participants have the option to manage a flexible budget and decide what mix of goods and services best meet their personal care needs, and is now in operation in fifteen states. More generally, since these demonstrations, the Deficit Reduction Act (2005) stated that, as of 2007, states could offer flexible budgets to eligible Medicaid participants to purchase disability services and supports of their choosing. There has since been a patchwork quilt of different variants of SDS across the country (e.g., Mi Via, New Mexico; IRIS (Include, Respect, I Self-Direct), Wisconsin).

In British Columbia (BC), Canada, individual funding came in the form of Choices in Support for Independent Living (CSIL), which was piloted in 1990 and became a permanent programme in 1993. This allows clients to have control over who they hire to provide personal assistance and when services are scheduled. Meanwhile, in Ontario, the Direct Funding Program (1998) was established to allow people with physical disabilities to become ‘self-managers’ of their own personal assistants. Subsequently, with pressure from the Independent Funding Coalition of Ontario, the provincial government enacted the ‘Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act’ (2008), which permitted the use of individualised funding for this wider group.

In a similar pattern, direct payments in the UK was first introduced with the Community Care (Direct Payments) Act 1996, again with an initial emphasis on people with physical disabilities paying for personal assistants. With growing pressure from charities such as In Control, the government published its 2007 Putting People First concordat, a shared vision and commitment to allowing all eligible disabled people choice and control over their support. A more extensive policy review of each of these jurisdictions can be found in Power et al., (Reference Power, Lord and DeFranco2013).

In response to these policy developments, much research work has focused on how support at the domestic level has been reconfigured and reframed in accordance with the new generation of values and obligations in these policies centred on personalisation (Lawson, Reference Lawson2007; O'Mahony and Quinn, Reference O'Mahony and Quinn2014) and more specifically on direct payments (Hall, Reference Hall2011; Slasberg et al., Reference Slasberg, Beresford and Schofield2012; Glasby and Littlechild, Reference Glasby and Littlechild2009). As stated, despite much work focusing on the positive aspirations of personalisation, much critical appraisal points to its connections with neo-liberal political ideologies and a cost-saving agenda (Glasby, Reference Glasby2014; Houston, Reference Houston2010). Recent austerity policies and their impact on public services have also attracted much attention (Featherstone et al., Reference Featherstone, Ince, Mackinnon, Strauss and Cumbers2012).

Austerity is taken to mean a political ideology grounded in the liberal economics’ view of the state as needing to reduce budget deficits with the belief that it purges the system and allows markets to adjust during adverse economic conditions (Lowndes and Pratchett, Reference Lowndes and Pratchett2011). While austerity emerged as a doctrine of neo-liberalism in the late twentieth century, austerity programmes remain controversial from both an economic and social justice perspective, with counter-arguments centring on their inefficacy as a stimulus for economic growth, as well as their adverse impact on the poorer segments of the population (Global Unions, 2013).

In terms of how austerity is being played in the various countries in this study, within England the unprecedented 2010 Comprehensive Spending Review and subsequent Welfare Reform Act has been critically appraised as fundamentally remaking the British welfare state with significant cuts to benefits and eligibility and an increased emphasis upon voluntarism and individual responsibility in welfare provision (Featherstone et al., Reference Featherstone, Ince, Mackinnon, Strauss and Cumbers2012). In a similar vein, Beresford (Reference Beresford2012) points to how, despite the UK government's plea to protect ‘vulnerable people’, including disabled people from the effects of the swingeing public service cuts, in reality disabled people have become particular targets (Beresford, Reference Beresford2012). Ridley et al. ( Reference Ridley, Spandler, Rosengard and Menhennet2012) examined the experiences of promoting SDS in the context of austerity in Scotland. They found that while most user groups appreciated the values embedded in SDS and were inspired by the ‘success stories’ which characterised promotional events, there were concerns about whether these continued to be realistic or achievable in the current climate. Care managers felt particularly strongly about the discrepancy between how they felt the council had promoted SDS to the public (as aspirational) and how it appeared in reality to staff going through the process (as a cost-saving measure).

Meanwhile in the US and Canada, a stricter austerity programme of fiscal tightening has been implemented than in many European countries with an erosion of benefits and eligibility, growing conditionality and an emphasis upon both individual responsibility and the shadow state (Rice and Prince, Reference Rice and Prince2013; Bishop, Reference Bishop2013). Using the example of Canada, Rice and Prince (Reference Rice and Prince2013) point to the increasing economic liberalism and the pressures from business interests and employers on government to contain the scope and generosity of benefits, and enforce tighter eligibility requirements in the wake of the global financial crisis.

While the above research is ever-more relevant today, given the significant economic downturn affecting many of these Western nations, much of its scholarship fails to disentangle the voices of state actors themselves and how they are positioned within the context of disability policy development. Indeed, despite the breadth of this scholarship, little of the disability-specific social policy literature focuses explicitly on government policy makers themselves, or seeks the views, experiences, and insights of this group. Exceptions include Osbourne's (Reference Osbourne2009) more general work on the ‘new public management’ within statutory services and Doty's (Reference Doty2000) review of disability policy administration in the US context.

Within more general welfare policy formation literature, some of the relevant policy design debates have focused on the degree of autonomy of national government to shape policy within the current context of neo-liberalism and localism (Jensen and Lolle, Reference Jensen and Lolle2013), vis-à-vis other stakeholders, including local government, trade unions, community groups and the private sector. Indeed, the relative positioning of trade unions seems to have a particularly important role in shaping personalisation in each country, as evident in the Netherlands where initial antagonism from the trade unions switched to a new role in supporting new care workers (Eurofound, 2007).

Esping-Anderson's (Reference Esping-Anderson1990) claim that party politics and ideology are a decisive driving force behind the development of the welfare state is thus relevant to this question of autonomy. Jensen and Lolle (Reference Jensen and Lolle2013) contend that strong local autonomy has given rise to substantial variations in the distribution of welfare services from municipality to municipality and has produced a fragmented welfare state as a result. Meanwhile, Wright (Reference Wright2012), using the example of workfare policies, found that the political spectrum is very much shaped by hypothetical models and assumptions and, rather than a purposely constructed ideology, policy design is relational, dynamic, differentiated, interdependent, intersubjective and interactive.

This conceptualisation of policy design as relational provides a useful backdrop for the aim of the paper: to critically examine how the narratives articulated from relevant policy makers characterise government thinking in the area of disability policy – in terms of their opinions on personalisation, how it is being achieved in the context of austerity and the management of expectations over reform. Its premise is that much of the social policy literature within the disability field has not sought to explore the insights and experiences of statutory actors driving these policies and seeking to implement them, particularly within the context of personalisation. The intention is not to (necessarily or otherwise) give legitimacy to the views of these policy makers. Rather it is to critically interrogate these views and to give social policy scholars insights into the reasoning, justifications, norms, and personal reflections of these stakeholders within the specific context of contemporary disability policy.

Findings

Achieving personalisation in the context of austerity: repositioning the role of government in social care

The continuing role of government in shaping and funding social care vis-à-vis other actors was explored. Some government officials in British Columbia, who had previously worked in the disability support sector, reflected critically on the way in which the disability and carer representative organisations have positioned themselves, in terms of their expectations of relying solely on government in the delivery of social care.

Indeed, the future outlook by certain participants was bleak in terms of the on-going level of funding for disability services. Many reflected on the fact that citizens could no longer assume sole reliance on government for funding and managing social support. Rather, some pointed towards the banking sector (as above) and disability savings schemes (e.g., Registered Disability Savings Plan, Canada and the proposed ABLE accounts in the US), as potential future sources of funding for social care. Some policy makers are changing the game plan entirely by re-shaping roles for different stakeholders, including civil society. Indeed, the future outlook for statutory social care by certain participants looked far from certain:

Given the above concerns, government legislators in the US said that they try to limit coverage of their self-directed services for fear of the ‘woodwork effect’. This means that they believe that if coverage for services is made too widely available, many people who rely on unpaid help from family and friends will ‘come out of the woodwork’ and ask for coverage of self-led support. In response to this belief, one participant talked about having to very carefully balance the availability of coverage with a perceived infinite demand:

This is a particularly pernicious appraisal of a political constituency – and points to a mistrust under the surface by some regarding the disability community as being active participants in society. This resonates with Winchester and Frydman (Reference Winchester and Frydman2003), who found states were especially cautious in extending support in areas with previously little institutional service costs.

The above bleak assessment of state support for persons with disabilities suggests that assumptions regarding the future role of the state can no longer be made in the current context of austerity. Moreover, the participants to some extent felt that this was out of their hands, as explored further in the following section. For social policy scholars, this raises important questions regarding how debates over reform are articulated to government.

Managing expectations for change

As discussed earlier in the paper, much of the disability social policy literature often makes calls for government reform on issues such as eligibility, policy design and legislative reform. This work often involves claims for a response or change of policy from government or a state institution. In this sense, a government or department, and their policy outputs, are often imagined as relatively fixed entities. Yet, at the outset, one of the strongest narratives expressed from policy makers was the importance of managing expectations over how disability policy is created and over some of the limitations in their policy making powers. This has to be done alongside a belief that there is no ‘government’ or ‘Department of X’. They see their position existing within a complex network made up of different internal and external lobbies, individuals and representative organisations, thus highlighting the varying, dynamic and complex nature of socio-political entities.

This acceptance of the diverse and dynamic nature of policy design resonates with Wright's (Reference Wright2012) work which emphasised its relational, heterogenous nature. This poses both a challenge for social policy scholars and representative groups but also an opportunity – in terms of opening up possibilities to engage with statutory actors at different levels and through different means.

As a corollary to this acknowledgement of statutory actors being positioned within a wider set of relationships, the process of managing expectations about change had to be dealt with carefully. In some cases, there was an active process of lowering expectations, as in the case in British Columbia, as a result of a period of high hopes for reform from the independent living movement in a new administration:

In contrast to Jensen and Lolle's (Reference Jensen and Lolle2013) finding of strong local government in welfare, there was a shared perception across all jurisdictions that many areas of local government lack the resources or expertise needed to bring about the reform being called for. Participants reflected on the hollowing out of local government, which meant that the commissioning and cultivation of a personalised support marketplace was a significant challenge:

The above quote illustrates the complex set of knowledge-bases, values and skills needed by local government actors to shape SDS policy, particularly in the US context, including a detailed knowledge of the client group and philosophies of different models, the technical understanding of funding arrangements, as well as being committed to positive outcomes for their citizens. More generally though, the hollowing out of government illustrated in the above quote is a concerning trend as, unlike the expected outcome of a reduced role for government in SDS, many participants expressed the view that it actually requires a greater role for local government in shaping the support market.

This reveals a feeling that the central government's role can be quite limited in informing the shape of policy on the ground. A similar perspective from a policy maker in England reveals how policy development is often haphazard in reality and is more often based on whether there are local ‘champions’ who meld together:

Given the heterogenous nature of disability policy design, while the participants were sympathetic to consultation, some who were seeking to drive personalisation felt that they have had more success in implementing a wider culture change by publishing a high-level government strategy first, articulated as ‘getting the policy over the line’ (R13, England) and then sitting down with stakeholders to debate its finer detail. Given the range of different professional groups, representative bodies and different lobbies, the same participant felt that change can become too stymied by different interest groups:

In this context, the partnership and consultation with stakeholders according to the participant becomes focused on how, rather than will, they implement this policy. In terms of rolling out this change, however, the participants across all countries were acutely aware of the sporadic nature of reform and the importance of local actors involved within the community and support sector. In the US, one participant perceived change to best occur through grass-roots movements in pockets where a local dynamic evolves to drive the change on the ground:

These insights have important consequences for social policy scholars who seek to produce and contribute research to inform policy change. Given the importance of local ‘champions’, it points to the growing necessity for co-production in research involving local stakeholders to act as a catalyst for generating changes on the ground.