Ireland has adopted a policy in support of individualisation
Interested service providers and people with disabilities and families have begun work on it
Government policy is not keeping up with this work
Operational plans and targets and systems governance arrangements are needed
These would enable real individualised options for people with disabilities
It is now time for the decision to get down to business.
The current policy and programmatic environment in Ireland is transitional, as Ireland begins preparations for a major shift away from congregate service models towards more individualised and socially inclusive options for lifestyle and other supports for persons with disabilities. Some of that shift, in the form of an ongoing systematic transformation of service models, has already taken place in a relatively small number of Irish agencies.
However, the bulk of change has focused on selected individual changes in support and lifestyle, as is reflected in the “Next Steps” accounts published by the National Federation of Voluntary Bodies. Even so, the vast majority of services and service settings are largely congregate in nature, and will likely remain so for at least a matter of decades. Leadership is needed to provide a clear operational pathway towards their replacement with the desired individualised options.
Under present conditions, even the occasional replacement of congregate models will likely follow the path of the creation of mini-institutional models to replace the larger congregate settings, thereby postponing for possibly a generation, any sense of widespread access to individualised options called for by recent policy. A new pattern of creating dispersed but smaller congregate models will divert and diffuse leadership energies, further delaying widespread individualisation. It would be much better to simply place an indefinite hold on the growth of new congregate options, so that always-scarce leadership capacity can be more exclusively focused on generating individualised options.
Though there are discussions currently underway to pave the way for some form of formal individualised funding system to potentially be created, it is not clear at this juncture whether that as-yet undefined system will be sufficiently broad-based enough to bring into being large numbers of self-directing individual options. Such an individualised funding system, of a substantial enough scale, would in turn require that the means to pay for it would have to be decisively resolved.
There are typically two routes to such an expansion of Individualised funding. The first would be to allocate new monies exclusively for individual funding, and the second would be to reallocate the funding for congregate models to the exclusive use of these monies for solely individualised supports. Both approaches could be used, but the generation of “new” monies to support solely individualised options would, in all likelihood, be hugely constrained by the State’s financial ability to set aside such monies for other than pilot-scale demonstration projects. However, a 1% set-aside added over a decade would immediately add approximately 10% to individual options alone. In all likelihood, Irish agencies that favour the continuance of their congregate models would strongly resist any increase in absolute funding directed solely to individualised options. However, there are now enough agencies interested in expanding their individual options to generate considerable momentum and scale, particularly over a decade.
From the experience of other international jurisdictions, it can be assumed that there are sufficient funds already in place in Irish congregate service models to pay for the sizable expansion of individualised options in Ireland, without the need for a separate “new“ funding stream for individualised options. Although, such a dedicated stream would be very helpful in developing the core of the initial growth of the individualised system sought by progressive interests in Irish society.
However, several obstacles requiring decisive leadership need to be engaged and resolved. The first is the absence of governmental (as opposed to solely HSE) targets for a planned phase-down of the quite massive inventory of now very dated Irish congregate models, including a quite sizable and growing number of mini-institutional settings. Without such targets being set and met, there is no realistic hope that funds for individualised options will become available in significant enough scale to shift the balance of the system. Nor will direct practice advance, given that the opportunities to learn and develop needed capacity will be much too few.
The second key obstacle is the current restricted capacity of Irish agencies to transform their service models from congregate to individualised ones. While there is a decided willingness amongst many of these agencies to pursue such objectives, the track record “on the ground” with accomplishing such completed service model transformations is quite limited. This lack of performance capacity can be addressed developmentally, but should it not be engaged effectively, this will most certainly delay for many years the emergence of widespread new opportunities for individualised options to become reliably available. However, we can overcome even this limitation, if there are targeted initiatives in each interested agency to become more proficient, with the process of converting congregate resources to individualised ones.
At present Ireland has, at the level of policy, declared that its future must involve a decided growth in self-directed and socially inclusive individualised options. This intention is genuine, but at least for the moment, it is not accompanied by a feasible operational plan from the state that would generate these outcomes. Typically, such operational plans are multi-year, i.e. 5- to 10-year plans that involve incremental annual system change targets, such that congregate models decline and individualised options proportionately replace them. These targets would need to be defined nationally in cooperation with the sector and then translated into annual regional and “agency by agency” work and funding plans. At the same time, it is not realistic to expect that the HSE can readily lead a transformation of this long-term kind, as its primary experience base has been with funding congregate models and not with creating individualised alternatives.
This lack of experience, and possibly the will to champion such difficult changes, given the already sizable and pressured workload of the HSE, suggests that a different approach to systems governance may be needed at the overall governmental level, rather than in the HSE. This might ensure sufficient political commitment to launch and sustain a comparatively long-term transformation, of the kind implied in the creation of widespread socially inclusive and self-directed individualised options as the core of the system of support for people with disabilities. Such a new governance entity should emphasise the presence of leadership from people with disabilities, their families, progressive professionals and agencies with actual experience of gradually turning worthy but challenging aims into reality. However, the state must do its part by putting in place the structural and policy commitments that can enable this job to progress to completion.
Ideally, such governance should be supported by a multi-party political agreement. This could ensure that the Irish State is held politically accountable for the performance of this new governance and mission, rather than saddling the HSE with more responsibilities without the resources, political will and human resources to ensure that the job can get done. A careful selection of public service leadership, that has actual proficiency with the programmatic content of these changes, would complement the other sources of broader community leadership, rather than relying as we do today on policy without an operational plan that can over time, generate actual outcomes in people’s lives “one person at a time”.
It is useful to note that Ireland would not need to single-handedly pioneer these changes, as much of that work has already been undertaken over at the least the past quarter century in many countries. For instance, the US has in place well over 300 different individual funding streams targeted at specific sub-populations. Australia is well into the process of making nationally portable individualised funding available to 460,000 Australians with a disability. New Zealand has generated and expanded individual funding going back a decade, the UK pioneered individual budgets several decades ago and various Canadian provinces have established long-term individual funding arrangements. Scotland has recently made it a right for people to have individualised options if they so choose. Consequently, Ireland is not starting in an experiential vacuum, as it can readily draw upon the work of many other countries, as well as the many notable accomplishments by small numbers in Ireland in the last decade.
That process of borrowing from the experience of others has been occurring informally for some time now in Ireland, and accounts for much of the appetite for progress on creating individualised options in the country. However, what is now lacking is a governmental decision to operationalise its existing policy into a workable multi-year plan that can incrementally build the individual options that the Irish public increasingly favours. If individualised options were to increase by 3-4 % per annum, then it is quite realistic to expect that 30-40% of persons with disabilities could conceivably enjoy individualised lifestyle and support options within a decade. That would also mean that Ireland would no longer struggle with 30%-40% of out-of-date congregate and mini-institutional models. Together, these two trend lines would mean almost doubling the actual hands-on level of experience in successfully creating good lives in the community “one person at a time”, for Irish people who live with a disability. This approach assumes the freezing of any new funds to expand congregate and mini-institutional support arrangements so that individual options become the preferred operational choice going forward.
Most importantly, it means that the government of Ireland must come to decision at a political level so that the work to accomplish the policy can begin and gradually expand in coming years. There is no doubt that the will to do so exists within broad aspects of the community and the service sector. Naturally, there is a wide range of complex problems to tackle and resolve in getting this process to move to benefit greater numbers. These challenges will become even more evident as experience is gained with greater numbers. However, addressing the predictable implementation problems will inevitably be incremental. Thus, the key at this point is to ensure that the operational process be launched and once that is done, the outcomes will gradually appear as the work gets done.