The recent report on congregated settings, if implemented, offers the prospect of a much improved quality of life for thousands of people with an intellectual disability. The report recognises the inalienable rights of people with disabilities, is based on indisputable evidence, and is supported by a radical plan. The Working Group is to be congratulated for putting the needs of people with disabilities first and for their courage in proposing the closure of all congregated settings over the next seven years. This article presents a summary of the report and concludes with some concerns that may hamper the realisation of a better future for people with a disability.
The Report is in two parts: part one examines the case for action, and part two outlines the strategy for community inclusion.
Today in Ireland over 4000 people with disabilities live in large congregated settings. This number has continued to increase over the last decade. The picture that emerges in the Report is one of people living isolated lives, often without basic dignity, choices and independence, despite the efforts of committed staff. Accommodating people in these settings clearly runs counter to the state’s policy of inclusion and full citizenship, as stated in several policy documents published over the past twenty years.
The Report provides a clear vision for people living in congregated settings. This vision requires that these people will be actively and effectively supported to live full, inclusive lives at the heart of their family, community and society and that they will be able to exercise meaningful choice, equal to that of other citizens, when choosing where and with whom to live. The Working Group was also clear that neither funders nor providers ‘own’ people with disabilities, nor should they exercise control over their lives on the basis that they are service users.
The Working Group conducted an in-depth survey, on the experiences of people with disabilities in congregated settings and the resources needed to run these services, in order to make evidence-based proposals. Christy Lynch, Project Manager for the Working Group, added first-hand insights to this survey by conducting a series of visits to congregated settings.
The survey was conducted across 74 centres that served from 10 to 340 people. A high proportion of residents had a severe or profound intellectual disability, challenging behaviour and multiple disabilities with high dependency levels. Residents were mainly middle.aged.
A review of international research on the costs, benefits and outcomes of de-institutionalisation and community living was conducted by the Working Group. This review showed conclusively that community-based services are superior to institutions, whether old or new, as places for people with disabilities to live. Community living is no more expensive than institutional care once the comparison is made on the basis of comparable needs and comparable quality of care. Successful community living requires close attention to the way services are set up and run, especially the quality of staff support.
The experience of other countries that have undertaken de-institutionalisation programmes was gathered through study visits to several countries and they confirmed that the direction of international policy is away from clustered accommodation towards supporting people to live in their local community with people of their own choosing. The account of the Norwegian experience drew attention to the risk that the movement to the community can be undermined by the absence of rights legislation, loss of qualified professionals, and poor oversight and auditing of services. The US experience confirmed that everyone can live in the community, and that people with the most severe disabilities make the most gains. It emphasised the importance of building the capacity of local communities, rather than just focusing on closing institutions.
The Working Group concluded that the case for taking action, now, to address the situation of people living in congregated settings is powerful and unassailable. The ethical case to move people from isolation to community, and in some cases, from lives lived without dignity, is beyond debate. Congregated provision is in breach of Ireland’s obligations under UN Conventions. The provision contradicts the policy of mainstreaming underpinning the Government’s National Disability Strategy (2004).
To achieve the benefits for people with disabilities and the wider social benefits from including people with disabilities in their own community, the Working Group proposed the following radical programme for change.
All those living in congregated settings should move to dispersed housing in the community. Here they should be supported to plan for their lives, and to take up valued social roles. The supports provided should include: a Person-centred plan, advocacy, support for community inclusion, in-home support, community-based primary care and specialist supports, and work/further education. People should be facilitated to choose where and with whom they wish to live. If they live with others who have a disability, then no more than four people with disabilities should share the same accommodation. The HSE should fund purpose-built community housing for any children under 18 years moving from congregated settings.
The Report recommends that no new congregated settings should be developed and there should be no new admissions to congregated settings. The accommodation needs of people moving from congregated settings should be met through a combination of purchased or rented housing, facilitated by individual housing authorities, overseen by the Department of Environment, Community and Local Government. Local rehousing plans should be prepared and jointly co-ordinated by local authorities and the HSE, in collaboration with service providers. The housing authorities and HSE should have distinct responsibilities. The HSE should provide for the health and personal social needs of residents moving to the community, while responsibility for housing rests with local housing authorities. Governance, management and delivery of in-home supports should be separate from provision of inclusion supports, to ensure that the person with a disability has maximum choice of support providers and maximum independence. Action will also be required by the HSE to strengthen the capacity of community health services to deliver supports to people with disabilities.
A named senior official in the HSE should be charged with driving and implementing the transitioning programme, assisted and guided by a National Implementation Group. A Working Group should be set up to coordinate the development of a range of protocols to ensure a coordinated approach to community inclusion for people with disabilities. The individualised supports for people with disabilities should be delivered through a coordinating local structure based on defined HSE catchment areas.
A manpower strategy to support the programme of transition to community settings should be devised by the National Implementation Group in partnership with key stakeholders. The scope for involving and transferring personnel currently working in congregated settings to deliver community supports should be explored in partnership with stakeholders through the proposed manpower strategy.
The Report recommends that a feasibility study be conducted on introducing tendering for services by the HSE. Support services should be funded by way of service.level agreements between the HSE and providers. Individuals should get their own personal service.level agreement which outlines who is responsible for delivering each aspect of their support provision. Also, the scope for introducing forms of individualised budgets, giving people as much control as possible over their choice of supports, should be examined by the HSE.
Funding currently in the system for meeting the needs of people in congregated settings should be retained and redeployed to support community inclusion; any savings arising from the move should be used for new community-based services.
The Report recommends that the state should provide loans to agencies with congregated settings who may wish to sell land, but who have difficulty doing so, to fund new accommodation in the community.
Other recommendations in the Report are: a change management programme to support the transitioning programme; a number of accelerated learning sites to provide robust examples of evidence-based transitions to models of community living; a congregated settings fund to provide support for emergencies during the transitioning cycle; and, finally, the establishment of a national evaluation framework to independently appraise the transition to community.
The move to community should be completed within seven years, with minimum annual targets set for each year in order to reach that goal. All agencies currently operating congregated settings should be required to submit their transitioning strategy to the HSE, with detailed operational plans, timeframes and deadlines, based on the review recommendations. Agency proposals should be part of annual discussions with the HSE in respect of service agreements.
These recommendations are certainly radical and, if implemented, they offer the prospect of a much improved quality of life for thousands of people with disabilities. However, I am concerned about the lack of a common vision among service providers and how this will be overcome, and the move towards the possible privatisation and fragmentation of services for people with disabilities.
It is clear that not all service providers share the vision expressed in this report. In my experience, some services do not behave in a way that shows they believe people with disabilities, apart from a select few, can be supported to have a home of their choice and participate as citizens in their community. They view UN conventions on rights and national policies as idealistic, but unrealistic, and they give little credence to research findings. These services continue to develop and promote congregated settings as the model of their choice for the people they serve. Will there really be the political will to implement this report and close all congregated settings, even recently built ones? Or will the Report just gather dust?
If Ireland was unable to implement national policies on institutional closure and community inclusion during the boom years of the Celtic tiger, what hope is there now? As many people know, staff make up 83% of the costs of running services for people with disabilities. If these costs could be reduced, large savings could be made. The Report notes that in the UK the gross annual salaries for support workers (£13,319) and service managers (£21,835) are considerably lower than salaries in Ireland, i.e. social care worker (ranging from €34,357.€45,939) and social care managers (ranging from €55,598.€63,885). In the UK, service providers are free to determine salary levels, unlike in Ireland where salaries are generally determined by scales set by the Department of Health. Plans to introduce tendering arrangements in Ireland, similar to those that exist in the UK, will, I believe, dramatically alter this situation. Services will need to compete to survive. This may lead to an increase in the privatisation of services, lower staff salaries and a focus on profit. How this will impact on the calibre of staff recruited, the ethos of services, and the quality of life of service users is unknown.
Finally, the Report proposes that responsibility for different aspects of service delivery will be allocated to different authorities. Accommodation is likely to become the responsibility of the local housing authority, while the HSE will continue to provide for people’s health and personal social needs. However, health and social care staff who provide in.house supports will be different to those who provide support for community inclusion. These arrangements offer the prospects for clearer lines of accountability, but they may also inadvertently result in the greater fragmentation of services.
The Working Group seems to have anticipated these concerns. It has laid down a challenge to the Department of Health to make its vision for the future accommodation needs of people with disabilities explicit. It has recommended: that a feasibility study are conducted to examine the impact of tendering for services; that protocols are developed to ensure a coordinated approach to community inclusion; and that accelerated learning sites are established to provide robust examples of evidence-based models of community living. In conclusion, this is a carefully considered and ambitious report that aims to ensure that all people with an intellectual disability are supported to take their rightful place in society.