Ms Tara Doheny:

We thank the committee for inviting Genio to appear before it. I am the reform manager and I am joined by Dr. Niamh Lally, principal investigator for the service reform fund, SRF and action research programme. I will talk about how Genio has developed a methodology for the training programme to support system reforms.

As part of the SRF, Genio advised on reform strategies, supported the implementation of change and provided resources from a fund of €45 million comprising public and philanthropic resources to implement change across the fields of disability, mental health and homelessness. Flagship projects of the SRF include Housing First in homelessness, individual placement and support in mental health and people to moving from congregated settings to communities in disability. These have all been rolled out nationally. The way we work is to support change over a specific period of time, build capacity and then step back.

All of Genio’s work has two core features. The first is the voice of the person. People using services and supports should be at the heart of the design, implementation and evaluation of services. Central to everything Genio does is the belief that services and supports should be shaped to the greatest extent possible by the people using them. This co-production not only ensures that services have more impact, it can also help to accelerate social service reform processes by articulating clearly the expressed will and preference of those using the services.

The second feature of Genio's work is a methodology for enabling change within complex, challenging systems. Realising rights can be a challenging process. Large, complex social and health services often get stuck in inappropriate models of support. Negative perceptions of people using services as lacking capacity and being vulnerable can result in people being excluded from mainstream society and being denied the relationships and sense of self-fulfilment we all take for granted. Genio has developed a model of intervention to help services re-orientate towards community-based, self-directed supports and to overcome deeply institutionalised practices.

We will concentrate our statement on the component of the SRF which focused on supporting people from ten large congregated settings to live fulfilling lives in the community. This work of the SRF was carried out between 2016 and 2022 hand in hand with the HSE national disability team. The methodology was based on approaches Genio has been supporting service providers to implement since 2008. These ten sites were prioritised by the HSE as many had received highly-critical HIQA reviews and were considered to be in need of urgent interventions. The focus of this programme, in line with Government policy, was to build self-directed, community-based services for these people in accordance with their will and preference and to support them to move from congregated settings to mainstream communities.

Prior to the SRF, the Genio Trust supported a large number of demonstration projects on community living and developed evidence on the impact and efficacy of community-based living. In 2013, a team led by an international expert in disability studies, Professor Roy McConkey, produced a report analysing the impact of supporting people with intellectual and physical disabilities and people with significant mental health challenges to move from congregated to community settings. The study followed the lives of 160 people over three points in time and found that the personalisation of accommodation had significant impacts on the people's degree of independence, social integration and anxiety. One of the key findings was that staff and families were often supportive especially once they saw these significant improvements.

In response to the challenges of implementing change to transform congregated services to community-based, personalised services Genio has developed training courses in supported self-directed living, SSDL, over the past six years. This training radically changed the assumptions that front-line staff held about people they supported. SSDL is an intensive approach spread over nine months where staff engage in discovery around people's wishes and supports them to achieve a good life as much as possible with other people in society. SSDL was adapted from social role valorisation in the US. It was central to our capacity building programme under the SRF as we provided training, information and expertise to individuals, families and service providers. The HSE identified having “change teams” working within services who have dedicated time to implement and lead new models of supports, as central to the successes of the SRF.

The number of people supported to move went far beyond the original targets with 370 people moving from these ten facilities over the period against an initial target of 163 people. Perhaps more importantly, the people were supported in ways shaped by their expressed will and preference in line with international best practice. The key to this was an intensive, rigorous process of training for staff, many of whom became champions of change in this process.

In 2016, the SSDL training was redesigned for senior managers and front-line staff due to a tight timeline and because ambitious numbers of people were to be supported to move into communities as a result of the HIQA reports. Therefore this training was tailored to the specific challenges in the these congregated settings. In many ways this training restructured how staff viewed the people they were supporting.

Stories were recorded and proactively shared during the time we supported them under the SRF. One example I will share is that of a man from the south of the country who lived in a large institution for more than 30 years and is a wheelchair user. This man has now retired. During the discovery process as part of the SSDL training, staff got to know this man in a different way as they were able to spend one-on-one time with him to identify his will and preferences. His wishes were to move back to his home town community to be near his siblings and to have a garden where he could have his own plants and grow some vegetables. A suitable home was identified in the community and staff supported this gentleman to make weekly visits to the local area, make connections and get to know the area facilities such as the post office, library, etc. This gentleman has now moved to his new home in the community. He has also joined the local choir and regularly attends the local GAA club to support his local team. He has learned to cook for himself and enjoys spending time in his wonderful, colourful garden, where his family comes to visit him regularly.

In addition to the SSDL training, an action research approach was used to support and inform the expansion of a community-of-practice, focused on overcoming the challenges of implementing reform of services from congregated settings to community-based services. Interviews were conducted with staff who had been involved in closing congregated settings and establishing community-based supports. A case-study was developed and leaders who had implemented change provided guidance to others on how to overcome challenges and transform their services.

Criteria-based funding was developed in partnership with the HSE national disability team and approved by the Genio Trust to finance the "community connection" component of the change process. This funding enabled staff trained in SSDL to explore ideas with individuals who were being supported to move to the community. In partnership with the HSE, regular visits were facilitated to the ten services to monitor and review progress and payments were only made when agreed targets and milestones were reached. Many of the services moved from being heavily criticised by HIQA to receiving praise for the quality of their community-based services.

We have learned three lessons from the implementation of change in supporting people to move to mainstream, community-settings. One was clarity of purpose. The SRF employed assessment criteria to access funding and required supports to be self-directed and provided in mainstream community-settings. It was an ambitious programme to help services transform the way they support people. The fact that the funding was tied to specific targets and quality of engagement enabled a creative pressure for change.

The second lesson relates to changing ingrained beliefs and practices. It must be recognised that shifting models from group-based, medicalised, congregated services to community-based, self-

directed services is highly challenging. Staff needed to have the opportunity to consult with the people using the services in their everyday practice for meaningful engagement.

When afforded this opportunity with a robust evidence based engagement methodology, the reform programme paved the way for front-line staff to see the people they support in a new light. Through this process staff biases and assumptions about the people they support were brought to light in a constructive way. Across the programmes participants expressed cases of being astounded and shocked at the change in their perception of people’s capacities and capabilities.

Finally, I refer to adapting to overcome challenges and sharing lessons. Individual services need to build their capacities to be able to avoid challenges. The change teams that led the change processes within services learned from each other in communities of practice about how to avoid challenges emerging from human resources, finance and sourcing accommodation to implement the high quality reform work. During the lifetime of the service reform fund, many workshops, information sessions and webinars were held by the HSE national office and supported by the Genio action research team to share the learnings.

I again thank the committee for inviting us. We are happy to discuss this programme of work further and answer any questions members may have.