In June this year the highly anticipated report of the Working Group on Congregated Settings (Time to move on from congregated settings) was published. It is a much.needed report, drawing from international research and from the current living situation of over 4000 people with disabilities in Ireland. The report explores the lives of people living in such settings and sets out a road map for moving those who live in settings with 10 or more other people, out of these settings and into the community. The new model that is proposed is visionary and it aims to considerably improve the living conditions for people previously living in congregated settings. The authors of the report recognise the considerable challenges that exists in implementing the new model of service and set out clear actions on how this can be achieved.
The report states, ‘Research studies examined by the working group showed conclusively that community-based services are superior to institutions as places for people with disabilities to spend their lives.’ It also states that congregated provision is in breach of Ireland’s obligations under United Nation Conventions. Furthermore, the report states ‘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 without dignity, is beyond debate.’
The Report sets out a very clear strategy, with 31 wide. ranging recommendations, for developing the new model of service. There are, however, significant challenges with regard to implementing the proposed new model of service, notably:
— In the period of time from 1999 to 2008 a total of 619 people moved from 46 of the 72 congregated settings surveyed as part of the work of the working group. In the same time period a total of 692 people moved into the same congregated settings. In reality, during the times of the greatest economic period in Irish history a total of 73 more people moved into these settings than moved out.
— The report recommends that the 4000 people be facilitated to move from the congregated settings over a seven-year period. This is in a time of severe economic restraint in Ireland and some additional financial resources will clearly be needed to facilitate this process. (It is recognised in the report that international evidence indicates that additional bridging funding is required for a defined period, while services are transitioning from a congregate to a community model.)
— Disability service budgets have been reduced by a minimum of 5% from 2008 to 2010 and by a further 1.5% in 2011.
— In the words of the working group, ‘some service providers may be able to facilitate the move to the community within existing resources, while other service providers will need additional funding either recurring or for a period of time. It may also be necessary to re-deploy funding from one site to another site.’ If this is to occur, it will require considerable negotiation and discussion.
— A study of the demographic data within the population of people with disability would indicate an older profile of people with disability, often living with ageing parents at home. The current reality is that when a parent can no longer support their family member with a disability at home, there is increased pressure for residential places and the congregate setting (and, in particular, the statutory service provider) is often the only service option. Personal case experience would indicate that this is why the numbers have increased in congregated settings, despite services attempting to move people into the community. This pressure is likely to continue and the ageing demographic profile will further add to this for a number of years into the future.
— Significant change is necessary with regard to changing the model of service required in some (although not all) service settings, including:
- A change in the culture to one where the main emphasis has to be on the person living in the setting
- Changes in restrictive practices
- Considerable investment in staff and management training
- Development of structures and systems which enhance quality and protect people from the risk of abuse and rights restrictions
- Considerable environmental adaptations.
The challenges in implementing the new model of support are considerable, as shown above. The Working Group clearly recognises that there will be considerable challenges and it recommends that, in the first instance, 5.7 accelerated learning sites be established which will develop and demonstrate the new model of service/support.
Prioritising the implementation of the new model
In the last number of years, there have been considerable development and improvement in services for people with disabilities and in other types of personal and social support services. There remains, however, a significant variation in the quality and standard of services, with some services delivering excellent quality and others not meeting national standards, to varying degrees. This is by no means unique to Ireland and recent media articles and whistleblower, and/or regulator.exposed, scandals/breaches of standards nationally and internationally (for example Rostrevor and Avondale Nursing Homes in Ireland, Winterbourne View and Treloar College in the United Kingdom, and the Young Adult Institute Network—a service supporting people with development disabilities in the United States) all illustrate the wide variations in standards in services.
The implementation of the Health Information and Quality Authority (HIQA) National Quality Standards for Residential Services for People with a Disability, and the pending development of regulations and subsequent registration and inspection of services for people with disabilities, will, in our view, have a major positive impact on the quality of service provision. If the approach taken is similar to that taken in residential services for older persons, then it is very likely that we will see increased scrutiny of services, increased accountability for service providers and improvements in quality. It is also reasonable to expect that services which are inherently unsafe and which do not provide appropriate quality supports may not exist in the future. This will apply to both congregated and non-congregated settings. However, a pivotal question is whether congregated settings are less likely to meet national standards? In our view, some are. Furthermore it is highly unlikely that these settings will ever meet the requirements of the national standards.
In the last 12 years our company has spent considerable time working as an independent support in organisations for people with disabilities in Ireland. During that time we have conducted over 100 reviews of services or service components. We have also been completing reviews of services with respect to the Health Information and Quality Authority (HIQA) National Standards for Residential Services for People with Disabilities, since they were developed. We have spent considerable time in all types of residential services being provided in Ireland today (statutory and voluntary) including community-based services, intentional communities, de-designated services, mental health services where people with disabilities still reside and services based in congregated settings. We have a very detailed understanding of the variations in standards that exist and the variations in living conditions and in quality of life that people with disabilities in Ireland experience today.
Our experience in working across services and, in particular, in evaluating services would indicate that:
— There is a difficulty in grouping all settings under the one broad heading, as there is a wide variation in service quality across the different congregated settings in terms of standards, culture, practice and environment. For example in some congregated settings all residents have individual rooms and live in very homely environments, with personal possessions, have access to advocates and experience a sense of individuality that is similar to people living in their own homes. In our experience these services will meet many aspects of the HIQA National Standards, and particularly the standards on quality of life, privacy and dignity, protection, finances, development and health and environment. Some people are very happy living in these settings and have told us during our reviews that they do not wish to move to the community. If these settings are shown to meet national standards, then one must ask the question as to whether these individuals have the right to continue to live in these settings.
— In other congregated settings, people are sharing dormitories, sometimes with up to fifteen other people, with little or no privacy or dignity, minimal personal possessions, little stimulation or purpose to their day, no access to advocacy, and with an inevitable associated high risk of abuse and with restrictions to their rights. In our experience these settings will be unable to meet many of the HIQA National Standards, particularly those relating to quality of life, privacy and dignity, daily life, personal relationships and family contacts, safeguarding and protection and all of the standards on rights. It is also our experience that many people are not happy in these settings and would prefer to live elsewhere if given the chance/opportunity.
— There are major variations in the quality systems and governance within congregated settings. Some organisations have very comprehensive approaches to quality, have safe and effective systems in place, have good governance, have well trained staff and have positive cultures. Others simply do not.
When one takes the previously identified themes into account, it is evident that there will be major challenges in introducing the proposed new model of support. It is also evident that national standards will be regulated in the near future and services will be inspected. Owing to environmental and organisational cultural factors, some congregated care settings will not meet national standards, when inspected. It is reasonable to assume, based on experience in other sectors already under inspection, that some services may not be registered and may have to cease operating as services (for example, five residential services for older persons have been closed under the inspection/registration process in that sector, and a number of others have chosen to close).
In this regard there would appear to be strong merit in focussing on services that are least likely to meet national standards in the transition process, as outlined in the report. Perhaps an alternative to choosing 5.7 accelerated learning sites would be to apply a benchmark audit of services against the HIQA standards across the main congregated settings and then to focus on moving people from the settings that are least likely to meet the standards, particularly from a dignity, safety and rights perspective. This would ensure that those most at risk in not having their human rights protected, those most at risk of exploitation and abuse and those whose dignity and privacy cannot be maintained to an acceptable standard due to environmental and other restrictions, could benefit from the project from the earliest point. This would also be the right thing to do from an ethical and moral perspective, particularly with regard to protecting those people most at risk.
In conclusion, the report of the Working Group is a welcome report and it clearly identifies the need for a transition to a new model of support for people who are currently living in congregated settings. Recognising the challenges that exist in implementing the new model proposed within the report, we advocate that the services least likely to meet national standards are identified and are given priority in the implementation of the proposed new model.