Joint Committee on Disability Matters díospóireacht -
Thursday, 20 Oct 2022

Supporting People with Disabilities to Live in Communities: Discussion

Chairman

Before we begin the meeting, I will deal with a few housekeeping matters. We are asked to exercise personal responsibility for ourselves and others in respect of Covid.

Witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable. Therefore, if their statements are defamatory and witnesses are directed to discontinue their remarks it is imperative they comply with the direction of the Chair. For witnesses appearing before the committee virtually there is no certainty in relation to parliamentary privilege.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official in such a way as to make him or her identifiable.

Some witnesses and members are joining online. Please bear with us if any technical problems arise because not everything runs smoothly.

I call Ms Doheny to make her opening statement.

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.

Chairman

I call on Mr. Padraig Mallon from the Crann Centre to make his opening statement.

Mr. Padraig Mallon

On behalf of our founder, Ms Kate Jarvey, head of services, Ms Colette Cahill, and service user, Ms Aileen Buckley, and our colleagues, Sarah Haight and Sariah Toze, from Ascend who are joining us from Washington DC, I thank the committee for the opportunity to share details of what we do at Crann, why it is important and the outcomes and impact we are having for children, adults and families living with neuro-physical disabilities.

For these families unavailability of key services and a lack of co-ordination in service delivery mean social isolation, a lack of normality as a family, lack access to educational and career opportunities and loss of hope. At Crann we have a unique solution focused on a co-ordinated care plan and wrap-around services for the whole family, enabling them to not only deal with these issues but to thrive. This is our two generation, 2Gen, approach. The Crann Centre, based in Ovens, County Cork, was established in 2014.

Our clients include children, adults and families living with spina bifida, hydrocephalus, cerebral palsy, muscular dystrophy, multiple sclerosis, arthrogryposis, acquired spinal injuries and stroke. These are complex conditions which significantly impact on the fabric of the family requiring lifelong clinical care and intensive in-community supports. There are more than 7,000 people in Munster living with a neuro-physical disability. In addition, there are more than 20,000 family members whose lives are impacted, all requiring services and supports. Nationally this number increases to almost 100,000. We currently support 300 Munster-based families and our strategic vision is to support more than 600 families in the next three years.

Our services focus on six key areas comprising health and continence; psychological well-being; mobility; education and career pathways; community and networks; and independent living. In a few moments our colleagues at Ascend will share details of the 2Gen approach and how a network of organisations across the United States use it to help improve family well-being. Crann is the first organisation in the Ascend network and the first in Europe to adapt this 2Gen approach for disability services. Why? It is because disability affects all family members and if the person with the disability is to thrive, it is not enough for them to get the supports they need. Their parents, carers and siblings need supports too. This is why our 2Gen approach works, because it serves all family members simultaneously.

Our key strategic priority is building a sustainably-funded organisation. We are totally reliant on fundraising. We do not receive any annual statutory funding. An equitable level of statutory support is a key priority for us. We have submitted a comprehensive business case to the HSE for a service level agreement, SLA, for our continence clinic. This service is recognised by the HSE team, consultants, urologists, clinicians and community health doctors as being a unique and vital addition to services for children, adults and families. Our referrals are increasing weekly. Without the modest annual funding set out in the business case, we cannot guarantee the future of this vital service, which is not available elsewhere. We know that our services are saving the HSE significant money, up to €100,000 for each pressure wound, which we prevent from ultimately requiring hospitalisation. We recently completed a social return on investment evaluation, SROI, which showed that for every €1 we spend on services our clients receive €4 in value, a 400% return on investment.

Ms Sarah Haight

I am the director of 2Gen practice at Ascend at the Aspen Institute. It is an honour to join the Chairman, Deputies, Senators and colleagues from Washington DC on the ancestral land of the Piscataway people. On behalf of our founding executive director, Anne Mosle, and our managing director, Marjorie Sims, along with our network partner colleagues at the Crann Centre, I thank the committee for this opportunity to speak about Ascend at the Aspen Institute and the two generation, or 2Gen, approach.

In 2010, in the aftermath of the great recession our founder, Anne Mosle, set out to break the cycle of intergenerational poverty and intentionally foster the well-being of children and the adults in their lives together. Our work from day one has honoured lived expertise and encompassed racial, gender and economic equity with an intersectional lens.

Ascend at the Aspen Institute brings together diverse leaders working across systems and sectors to create a society where every family flourishes. We have been building a national network to surface and spread innovative 2Gen approaches in communities across the United States. Today, the Ascend network includes 479 partners in every state in the US, as well as DC and Puerto Rico, and now reaches across the globe through our only European partner, the Crann Centre, and two other international partners. Together this movement of parents, practitioners, policymakers and philanthropists are working to transform systems impacting more than 10 million families.

Many programmes focus solely on the child or the parent, but 2Gen approaches do not focus exclusively on either a child’s development or isolate an adult’s needs, because their wellbeing is interconnected and interdependent. 2Gen approaches aim to integrate services and supports to move the whole family forward, benefitting both the child and the adults in their lives. 2Gen approaches recognise whole family units, as families define themselves. By design, we seek to understand the multiple dimensions of family life and consider a variety of pathways for promoting effective outcomes for everyone. We work with families as experts and meaningfully engage parents and caregivers in designing policies and programmes that affect them. Our goal is to develop holistic, integrated and equity-focused solutions.

A 2Gen approach can take many forms in policy and practice. One example of such an approach would be a care centre providing young children with early childhood education opportunities while also offering a workforce development programme for parents and caregivers. The Crann Centre is undertaking this important work by recognising the needs of both children with disabilities and their caregivers.

In 2012, in partnership with a group of philanthropic partners, Ascend published the Two Generations, One Future report that laid the groundwork for the growth and development of the 2Gen field. Over the last decade of accomplishments and learnings from our network, Ascend has advanced 2Gen approaches with more than ten US Governors' Cabinets, more than 100 fellows from across human services, non-profit, and philanthropic systems, and has engaged more than 60 parent advisers to translate their lived experience into new policies and programmes. We are thrilled to be partnering with the Crann Centre on advancing 2Gen for families with disabilities and creating a new way of working to lift up these families' strengths and centre their voices in the systems designed to serve them.

Chairman

I thank Ms Haight. We will go straight to our members. The first on the rota is Deputy Dessie Ellis.

Deputy Dessie Ellis

I thank Genio, Ascend and the Crann Centre for their input. From what I have heard, I have much to learn because a lot of it was not familiar to me. I have not been on this committee for long and I am trying to learn what is happening across the country.

When I was listening to the statements, I got the impression that much of this is Munster based in terms of the activities. There is much philanthropy in terms of support and funding. Applications have been made to the Departments to get more stable funding, which is essential for all of the organisations. I found the 2Gen approach interesting in that it takes in family members, including the person who has the disability. I would like to hear a bit more about this because it seems to be a very good approach. My experience has been that in many cases when people who have a disability, whether an intellectual or a physical disability, get older, we often find that those around them die or move on and they are left on their own. They have no family supports around them. I often see this in my constituency. While much of what we have heard here is about the structures around that person, I find that people are left isolated. How do we deal with that?

In terms of housing, as was mentioned, research was done on people who were living in complexes, where there would have been a significant number of people with disabilities, and who ended up in the community. I refer to HAIL Housing, for instance, which provides mental health and others supports. I would have thought that was a good model. However, the witnesses focused on trying to get people back to the areas they are from. I am curious about the attitude to these types of complexes and what people think of them.

Many of the things I have heard here are new to me. The 2Gen approach is very interesting and it has come mainly from America. It has been imported here through Crann. Are there any plans to expand this further? Obviously, the economic issue is a big one but are there plans to expand this? In Munster, it has grown from 300, with a target of up to 600 over the next couple of years. Maybe the witnesses will explain to us whether it is possible to expand this over the next while.

Ms Kate Jarvey

It is a great honour to be here. The 2Gen for Ireland is a new model. It is very well proven with ten years of evidence-based work in the United States. From the Crann perspective, it has been a great privilege to work with Ascend at the Aspen Institute to adapt the 2Gen to serve people with disability. In terms of numbers, first and foremost, it was about establishing the project and bringing value to lives, the lives of all the family. Second, it was about creating the model of care that we can evidence base ourselves, or proving the model. That was stage two. It was about serving the families well and proving the model. On the idea of expansion, the answer is very much a "Yes". However, we need to get to proof of concept for this model first. We need to be able to show people and service users that this is a very good way and a better way to serve people. It is cost effective and it works in the community. The answer to the question on expansion is "Yes" but in time.

Ms Tara Doheny

On housing, back in 2008 when we set about putting out applications for funding, services would have come back to us. They would have worked with people who were interested in moving into the community and their families. They would have put in applications to us which were assessed against specific criteria. Once the funding had been received, staff were employed to work with those individuals in a different way to source suitable accommodation in the community for their needs. The services then had the challenging piece of unbundling funding within the services to support that person in the community. Some people have quite complex needs and sometimes many adaptations were required in the home. The services would have worked with each individual around that piece in terms of sourcing what they needed.

The important thing around the training that was provided, in terms of supported self-directed living training, was that staff were trained to support and work with individuals in a different way. It was not the medicalised model. It was more around the preference and needs of the person.

We started small and then we grew bigger. With the service reform fund, we look at whole large institutions around that reform piece. We started small. We became champions for change and learned from experiences and used the stories to help and support other people who wanted to move.

Deputy Seán Canney

I thank the witnesses for their very enlightening opening remarks. I listened to the questions Deputy Ellis put. Members find that at times, there is a huge difficulty for people with disabilities, in that there are no clear pathways as to how they can get the supports they need to live independently. I do not know how this can be dealt with but there is a repeated request for people to prove they have a disability. There is not a standard way of assessing people's needs across the country. It is different in different locations. How can we have a more caring and understanding approach to people with disabilities? Part of this is that we are trying to provide supports to everyone without trying to provide individual supports to people who need them. It is a difficulty, in that we are taking a one solution fits all approach, which does not work with disabilities.

There are huge gaps. The idea of having people living independently, having a set up for them and what is being done in Cork is great. How does that become national policy? How can we help it become national policy and become a standard? How do we track the success or otherwise of the project as it evolves? If the service was to grow, how could it be monitored to make sure it is still delivering a high-class service and doing what it was set up to do? As we roll things out further and do them nationally, they get lost and we do not get the results for people with disabilities.

This may be is a cultural change we have to try to get around, and I am getting around it, but instead of looking people's disability, we should look at their different abilities. How do we harness that to have people living independently? One of the biggest fears families, especially parents, who have a member with a disability have is around what will happen when they pass away and who will be the person's guardian. Those are my thoughts. I thank the witnesses who may have some responses for me.

Ms Tara Doheny

There is not one solution that fits all. Everyone is unique and individual and every support system is really different. Our model of support entails putting a lot of training into supporting staff to work and support people in a different way in the community. That is not only for paid staff. We look at natural connections within the community where people can link into communities where they came from and with family members and friends. It is not only about moving from an institution into the community; it is also about that ongoing support and review to make sure people's preferences have been listened to. Our model of support is in terms of that ongoing capacity-building for staff because they are the people in the community who are paid to check in on individuals as well as friends and family.

One of the things we have done to ensure it is long-lasting is that we have supported the HSE through funding to continue supported self-directed living training. In other large institutions, staff can now commence this training. We also bring staff together on a community of practice so that they can learn from one another and share ideas. It is very important that everybody who moves into the community has that ongoing natural support and paid support, if needs be.

Dr. Niamh Lally

The questions raised about that national policy, how it can be monitored and safeguarded and how one tracks success is very much about embedding a sense of curiosity within the system and among the practitioners and the staff who are within and run the services and who are very passionate about them. Part and parcel of what we do in Genio is really about that process. Everybody in this room knows that decongregation or shutting down long-term institutions, not just the buildings, but the institutional practices and ways of working, is very difficult. It is a very challenging arena to be working in. Part of the process that we bring in Genio is that curiosity through an action research process. That is very much about asking people how they are experiencing their service, what their lives are like and about their practices and putting those at times undiscussable things back on to the table, that is, things that go unsaid and the practices that are not unearthed. In this arena there are very strong and very different views because there are so many stakeholders involved. However, it is about giving people that airtime and that sense that they are being heard and that they are contribution is valued. It is really about tapping into the expertise that is already there.

Much of the time there can be a policy implementation gap. There can be fantastic policies but it is about how you embed them on the ground. That is very much about tapping into the expertise in the room, working with that coalition of the willing and exposing people to each other and to all that richness that is there in terms of how people want to live their lives, how people want to live in the community and their will and preference and their rights. It is about trying to bring people who have that expertise together, that, is, the people with lived experiences, the people in use of services, the people with disabilities, the staff, the policymakers and the people with oversight. It is really about how one co-designs a way forward together, although not necessarily a solution because, as Ms Doheny said, not one solution fits all. The question is around how one co-designs it and how one can people be brought together. It is really about embedding that in a way that one can have those fast-paced loops and feedbacks we have with the HSE and the National Disability Office. It allows us to feedback to them quickly, in terms of what is happening on the ground, what are the good practices and what are the things that are blocking them, so that people can move together in a way that is solution-focused and that moves forward. That is what one gets in terms of that sustainability piece, that change in practice and that breaking down of institutional barriers.

Deputy Seán Canney

To clarify something, is there a way of measuring what is going on and how it is evolving? Is there data to back that up or is it just a softer approach than that?

Dr. Niamh Lally

Yes, it is very much a two-pronged approach. The process side of things is the action research side of things where one is finding out what is happening on the ground now and feeding that back up, so that we can feed into that loop. As Ms Doheny mentioned, with the service reform fund, there were criteria attached to that. There was funding attached to that. Not everyone got the same funding. It was weighted differently, depending on the area of the country and on the community health organisation. That was monitored and tracked over a period of time.

Ms Tara Doheny

There is a rigorous process around each service and what it was applying to do and how many people it wanted to support. As Dr. Lally said, we did not just divide the pot of money between the organisations or CHOs. Applications were put in to a grants committee. Family members sat on that committee and reviewed proposals. Money was divided out and awarded, based on those proposals and on how many people were going to be supported. After money was awarded, monitoring and progress around how those individuals were progressing in the community was very much tracked over the three years.

Ms Colette Cahill

From our perspective in Crann and as Deputy Canney rightly said, there are many different types of disability. "Disability" is one word but there are many different types of disability, so the one solution does not fit all. Our model of care in Crann is about looking at people with a neuro-physical disability and how with our wraparound service we bring all the family into that situation and ask what its goal and plan are for the future. Fundamentally, with the families we meet, what is really of concern to them is around what happens in the future if something happens to them. We look at that from a whole family perspective and support the family around that. We also look at the needs of the person with the disability and the needs of the family. Then with our model and our wraparound services, we build towards giving them skills to achieving those goals.

One of the key areas for us in our service offerings is an independent living module and that develops those life skills from a very young age. Often people with disabilities may have been over protected as a young child. Then when they get to the age of transitioning on to third level or on to further education, they do not have the life skills. Suddenly they are looking to live independently but they do not have the basic skills. We work with the family from a very young age in bringing on those skills. We look at adaptations that need to be made, so they can achieve the successes and the goals they want in life. Another big part of that, and a part of what we do in our model, is around researching that and evidencing that. I will let our colleagues in Ascend or Mr. Pádraig Mallon speak to that.

Mr Pádraig Mallon

Measurement is built into the 2Gen approach and our colleagues at Ascend can talk about that.

Ms Sarah Haight

I can share a little bit about the evidence behind 2Gen approaches. There is a strong and growing body of evidence in the United States. We know the return on investment in early childhood programmes is as high as 13%. We also know the greatest predictor of a family's overall economic mobility is the parents' educational attainment. We know now from brain science that people's brains change and adapt when they become parents, just like babies brains. This is true of mothers and fathers. These bodies of research inform 2Gen approaches.

One example of its impact in the United States is Tulsa, Oklahoma, where there is a large early childhood centre called Cap Tulsa. The leaders at Cap Tulsa realised that many parents of children who were enrolled were seeking greater opportunity, namely, better jobs and wages. They created an employment training programme in the health field, training parents in nursing and health technology. In studying the impact of this 2Gen approach, researchers found that the children of parents enrolled in job training had higher rates of school attendance and the parents themselves reported lower rates of stress. This is applicable to this conversation because what we are seeing is that when the whole family is addressed in its need, in this instance, it is an educational and economic need, there are improved results for both generations. We like to say that you cannot give one member of the generation a balloon and the other a dead weight. These types of efforts are gaining momentum across the US and they demonstrate both the effectiveness and the efficiency of 2Gen.

Mr. Pádraig Mallon

To add to Ms Haight's point and to answer Deputy Canney's point on measurement, we believe very strongly in measuring and evidencing our work.

It is really important when working with a new model that we understand the value we are creating for the people who are availing of the services. We recently undertook a social return on investment initiative, a valuation of four of our key services. As we said in the opening statement, that captured from the service users themselves what value the services were delivering for them. The value they attached to the services they are receiving from the Crann Centre is four times what it costs us to deliver those services. For every €1 we spend they get €4 in value. That sort of fiscal-based evidence hopefully points to a situation where you are not just looking at the qualitative aspects of the improvements in terms of life improvements and health and well-being improvements. We are really focused on measuring that too, and that is why social return on investment analysis is a very effective tool. It asks the stakeholders what value they would put on the service if it was not available and they had to pay for it. We are talking about thousands of euro in value for services we would offer, which could be an opportunity to meet with peers. For families, children and adults, our service provides the opportunity to come together. Isolation is one of the key issues for people with a disability. The value they would place on that would be upwards of about €6,000 for a programme that enables them to come together and meet with their families. We feel very confident that we are able to track and show clear evidence that there is a return on investment by philanthropy or the State. I think that is rooted in Deputy Canney's question as to how we know that approaches are working and how we can prove that we are delivering value for the funds coming in.

Social return on investment is one tool among others, but it happens to be quite effective in hearing the voice of the stakeholder and understanding the value to them. There is no point in delivering services if they do not ultimately deliver value for the person who receives those services. Not alone is it important to deliver good outcomes but it is also important to be able to evidence for them as well. That is why the 2Gen approach and the methodology established over ten years through Aspen and Ascend is attractive to us, because it gives us a strategic framework in which to deliver great services but also commitment to measuring and evidencing.

Deputy Seán Canney

That last contribution was great. It is important that we continue to highlight the social return on investment, and that if money is being invested, people are benefitting from it and the social return is there. I say well done.

Deputy Pauline Tully

I am sorry I had to pop out but I had to speak in the Dáil for a few minutes. I read through the opening statements last night and I have a couple of questions. Moving people from congregated settings is very important work and it is obviously time to move on from congregated settings as the targets were not reached there. The witnesses talked about the staff in institutions and how being trained to look at things differently and engage with the residents has meant that they looked at their work completely differently. Would the witnesses say that initially people in congregated settings were being treated almost as patients rather than as residents and that that has changed? How much more work has to be done to move more people from congregated settings into the community?

Ms Tara Doheny

The training was very important. When we set out with initial pilot projects back in 2018 and when we put out applications for funding, we very quickly realised that staff were not equipped to work with people and to help them move to community in a different way. They had been used to working and were trained to work in a specific way within the large institution. They did not have the time to work with people individually to see what their will and preference was. This was something that we found in the very early days so we consulted with the services and brought some of them together. They told us they needed training because they wanted to see people move on and wanted to work differently. Not everybody came on that journey in the early stages, so we engaged in social role valorisation training and over the years that developed training into the nine month training. That was a key ingredient to help staff understand and learn more about the people they were supporting, not only in a medical model. We were given some examples when out on visits where some people would have been on medication and then through the new discovery process, they had reviewed medication and that person no longer needed it.

Some of the most ingrained staff in institutions who are now the best champions for change went on that journey in the training. Not everybody stayed, some people felt this was not for them. We have to realise as well that within the large institutions there are cleaners, cooks and gardeners. Some of them came on the journey and did the training as well, so they were community connectors. That is what they were seen in terms of supporting people in the community. If they needed support medical support, they go to the local GP or the local nurse to get that support, but certainly the key ingredient was that training. I refer to the community of practice that came out of training and the learning from the other services of what was and was not working. Small things came up like how we work petty cash and transport when we move to community. All these small things were huge when they were moving from an institution out to community living. They were all issues that had to worked through and ironed out. The staff themselves worked that out. There might have been another service further along the tracks that was able to help and provide support.

For people who have now moved to the community, it is really important that that ongoing support, monitoring and review in terms of the discovery continues for the individual people. Everybody's needs change over time, so it is important that staff are trained to recognise that and to continue to review. The Deputy is right that there are more people in large institutions and training needs to continue, and the HSE national team is continuing that training through the service reform fund. That will be finishing up next year for the next cohort of people moving out of the large institutions.

Obviously there are some barriers around housing access, and suitable housing at the moment. That is a huge challenge. However, when we started this journey through the service reform fund we were fortunate there was accommodation available and the people were able to move in and we were able to use to the stories around the successes to support and to share with others.

Deputy Pauline Tully

Crann supports the whole family as a unit, but how does it identify what families to support or how do families access its services? It covers the Munster area at the moment.

Ms Colette Cahill

Predominantly, I suppose we cover CHO 4, which is Cork and Kerry, but we have extended a little further afield to other counties within Munster. There are many different routes as to how people access our services, because of the range of services we offer, particularly our continent service. That has gotten a referral pathway where the hospitals, consultants and local health services refer into our continent service. People can self refer, but as we have grown over time and people have begun to know us, they certainly come more and other people like rehabilitation centres are referring to us to support the family because of the services we offer. We are not just a medical model. The range of services we have, because we are living and following the Aspen 2Gen model, really focus on the family, so quite often we have people who maybe have a child or older adult with a disability but we would support their family as opposed to just supporting that person. Many of our services are supporting the parents and siblings, and maybe supporting the carers in the community or the special needs assistants in the schools. This is all to support the family unit to make life that bit easier for them.

Deputy Pauline Tully

Is there a waiting list for services?

Ms Colette Cahill

There is a waiting list. In the last 12 months we have grown 75% in terms of people. As we are becoming known and as our services are growing, the demand is certainly increasing. We are currently serving 305 families but if you average that out at about four per family and if we are serving the whole family, which we do, you could be talking more than 1,000 people that we are potentially servicing. They are accessing our psychological support services, our continence service, our occupational therapy, OT, services and our independent living services, as well as our community services.

We were fortunate this year in that we opened our first inclusive, fully-accessible playground where all the family can come together and play. That is really important because many parties or similar events cannot happen because the kids cannot go as they are not accessible. We have kids parties where the whole class can come and play as a unit along with the family. It is the ripple effect. That is our model.

Deputy Pauline Tully

It is very important. Do other organisations carry out similar projects in other CHOs? I have not heard of it.

Ms Colette Cahill

No. Ms Jarvey may wish comment.

Ms Kate Jarvey

No, not yet. When this project began in 2014, it started with the research. We hired a research doctor to do a needs assessment because the core part of this project from day one has been the voice of the stakeholder. Once we identified the stakeholders' needs, we developed a project in response. I looked for a model of care that could respond to what the research showed us. The original piece of research completed in 2014 or 2015 was a revelation. It showed that the primary concern for our stakeholders, which I thought would be clinical, was not clinical, but was social isolation. I then began to look for a model of care that addressed the whole family, because social isolation was affecting the whole family. It meant they did not engage in the community they lived in and instead of being proactive members of the community, they were marginalised. I found the Aspen 2Gen model of care in the United States from a connection I had with United Way in central Indiana, which was using the 2Gen model. It was my eureka moment. We are the first to employ the 2Gen model for disability in Ireland. We would love to prove the model of the evidence-based platform of data and for people to copy us or expand the programme.

Chairman

I call Deputy Murnane O'Connor.

Deputy Jennifer Murnane O'Connor

I thank the witnesses. I support people with disabilities living in their community. It is important and it is great that we have that focus. Will Ms Buckley describe her experience as the parent of a child with a disability and how the Crann Centre supports her to live in her community? Will Ms Jarvey speak about her motivation for founding the Crann Centre? What needs is she addressing that are not being met by other organisations? Deputy Tully touched on that. Ms Cahill referred in her opening to the SLA for a continence clinic. Will she describe this service and what contribution it makes to care in the community? To go back to Ms Jarvey, what was the basis for adopting the 2Gen model? What evidence does Ms Haight have to support the effectiveness of the 2Gen approach? What are the long-term impacts? That is important as we go forward. It is all about learning. I am in CHO 5, so it is important for me to listen and learn today. What does the future hold for Ms Buckley's family and where is Crann in that?

Chairman

Ms Buckley, do you want to start?

Deputy Jennifer Murnane O'Connor

You can divide them up.

Chairman

Ms Buckley is from the next village to my home village, Kiskeam. There is no bias.

Ms Aileen Buckley

My daughter is 17 years old. She has spina bifida and hydrocephalus and she is a full-time wheelchair user. We were probably the first people at Crann's door when it opened. From when she was born, our biggest hope was that she would be as independent as possible and achieve her full potential. When we knocked on Crann's door, it was fantastic for the entire family. Crann's doors opened at a transition phase for Niamh. She was moving on to secondary school, which was a time of huge stress in our house because she was moving from a very small school to a much bigger school. She had also moved into a wheelchair full-time at that point, which brought its own challenges. She did not know how to use a wheelchair properly. Straight away, she undertook a mobility programme that taught her how to better navigate her environment. She also undertook confidence training to ensure her voice would be heard and that she was confident enough to express her feelings.

There were many supports for my family and for me. My other daughter was approaching the end of her secondary school education at that time and she was hugely worried about Niamh starting off and how she would manage, but those fears were alleviated through the mobility programme.

Chairman

Well done. Who wants to take the other questions? I call Ms Cahill.

Ms Colette Cahill

I think the question on continence service was for me.

Deputy Jennifer Murnane O'Connor

Yes.

Ms Colette Cahill

Health and continence is one of the six key theme areas we have within Crann. As the Deputy rightly said, we have made a business case for an SLA within the HSE. Speaking to Ms Jarvey's point on the research carried out, the need identified by the stakeholders was the lack of community support around bowel and bladder continence services. We set about addressing this at Crann. We set up our continence service, which is the only community continence service that covers both bowel and bladder. It is a sensitive area for us, as a nation, and in our culture to talk about, but it is the elephant in the room when it comes to disability. If you ask a person with a spinal cord or another type of injury, continence is the biggest factor that causes a lot of ripple effects.

Our continence service has grown exponentially. In the last year alone, we have seen 75% growth in people attending our service, which is quite substantial. What we provide is support to the individual. It is a human right to be able to manage your continence and to go out. It affects families because they plan their trips and journeys based on where the next toileting facility is. For the service we provide, we bring in and meet with families and work with them over a period of time. Our nurses, Eimear and Ita, work with them to come up with a programme that works for them. Many of our referrals come from hospitals and community settings because we can give the time to provide that support. The reason it works so well is that, while we have our health and continence service, we are not just a medical model, as Ms Jarvey said, and as came out in the research. We also provide psychological supports that can go around having continence issues. We have mobility and occupational therapy services, so if seating or positioning is an issue we can bring that service in. It is a wraparound service.

We discovered through working with families that there was a gap in that SNAs in schools were not being trained so our team, including Ita and Eimear, took that on. Eimear developed an SNA training programme to align with the hospitals. We are currently the only setting providing SNA training for continence in Ireland. We have trained 120 SNAs in the past year and a half.

Deputy Jennifer Murnane O'Connor

That is brilliant. Well done.

Ms Colette Cahill

The ripple effect also allows for children to attend respite because we train the social care workers. We have recently been accredited by the Nursing and Midwifery Board of Ireland, NMBI so we are now training nurses. So far we have trained 20 nurses. Training SNAs is our ultimate goal. We are providing the service for all of these people free of charge and we are not funded for that.

Chairman

Will Ms Haight in Washington address Deputy Murnane O'Connor's questions?

Ms Sarah Haight

In the US there are five key components of two-generation approaches. They are early childhood services; post-secondary or what we often call college or workforce development services; economic assets which includes what kind of public benefits the family might need; social capital including access to networks, individual and institutional supports; and health and well-being. The Crann Centre's two-generation approach focuses on the health and well-being component but by applying a two-generation lens, it also considers the economic and social needs of the family. As I noted earlier, in the US we have a lot of evidence about those components, such as the return on investment from early childhood programmes and the knowledge that parents' educational attainment has the greatest impact on the child's overall economic mobility. We also have evidence of the concept of mutual motivation, which refers to when a child is learning and developing and the child can motivate the parent. Equally, when a parent is learning and growing, he or she can reinforce subjects and ideas for the child.

We are seeing emerging evidence that children who are part of two-generation approaches are more likely to attend school regularly and read by third grade. Parents who are engaged in their own dreams and aspirations and who are seen not just as parents, but as whole people with economic and educational aspirations, are more likely to have living-wage jobs and more economic stability for their families.

When we think about evidence, we also think about this from a systems standpoint. In states and counties in the US where there is a two-generation lens, we see more co-ordination and alignment among systems that aim to serve families. That results in faster services; services that are more tailored to the unique needs of families; and more dignified treatment of families, recognising their strengths, which we believe will result in better long-term outcomes for those families.

Ms Kate Jarvey

I will give the committee a snippet of background. I am a lifelong philanthropist. It is sort of in my DNA as I hail from the Lilly pharmaceutical family and philanthropy is a strong family tradition so I suppose I am hardwired to be a philanthropist.

I came to live in Ireland in 1997 and was looking for a project that could bring value to lives, prove it was a good way to serve people and eventually provide systems change. Through personal connections I discovered that services for persons with disabilities in Ireland were fragmented and difficult to access. Stress on families was compounded by this fragmented care. That was when my ears pricked up and I thought perhaps there was a project in this area. We hired a research doctor to carry out the preliminary professional needs assessment in which the voice of the stakeholder was honoured and shone through. The project then moved forward in line with what the stakeholders needed and wanted. They told us that, like the rest of us, they do not live in silos and asked that their care not be delivered in silos. They said that their clinical care should not be separated from their health and well-being because that is not how they, I or anyone lives. They have disabilities and complex medical needs demanding clinical care but these are all interwoven into people's health and well-being. That is when the two-generation model came to my attention and I was fortunate to have Ascend take me under its wing and mentor Crann to adapt the two-generation model for disability, and here we are today.

Deputy Holly Cairns

We are discussing perhaps one of the most complex areas of the UN Convention on the Rights of Persons with Disabilities, UNCRPD, which is the right to live independently and be included in the community. Enabling people to exercise that right requires complex supports, crucially suitable housing and interconnected physical and social facilities. The HSE's strategy Time to Move on from Congregated Settings: a Strategy for Community Inclusion is moving much too slowly. The most pressing issue is the more than 1,300 people aged under 65 who are forced into nursing homes because the State will still not support them in community settings.

I thank the witnesses for helping us to understand how their organisations operate and how their models of support can and should be applied in other settings to help as many people as possible to live independent lives actively in their communities. As a Cork TD I am familiar with the incredible work that Crann Centre Ireland does in Ovens, County Cork. Its use of the two-generation approach that recognises whole family units and integrated processes responds to many of the issues that are raised on a weekly basis at this committee. In his opening statement, Mr. Mallon mentioned that collaboration between a whole series of actors is important in the development of the two-generation approach. I am aware it has been elaborated somewhat already, but from its experience in the US and Ireland, will the representatives explain some more about the significance of the co-operation?

One of the issues disabled people face here, as the witnesses have mentioned, is a siloed approach with some responsibilities falling under the HSE and others under the Department of Housing, Local Government and Heritage, the Department of Transport or local authorities and so on. Consistently we see people falling through the cracks. Will the representatives of the Crann Centre elaborate on the particular challenges faced by people with disabilities living in rural Ireland? What are their key recommendations to create systematic change? Can they comment from their experience on what work can be done to simplify and make Government services more accessible?

We are all struck by Genio's emphasis on having the people who will be using the services and supports being at the heart of the design. That should not be striking. It is clear that on average the implementation and evaluation of services in Ireland are in no way close to that model. Ms Doheny mentioned research findings that the personalisation of accommodation had significant impacts on the degree of independence, social integration and reduction of anxiety of people moving from congregated settings. Will the representatives from Genio elaborate on that point? How does that approach function on the ground?

Genio's work in helping people to move from congregated settings under the service reform fund in tandem with the HSE is positive and welcome. From the lessons it has learned in that process, what is the potential for that approach to be rolled out on a much larger scale to support the hundreds of people who are still unfortunately in congregated settings? Genio has correctly identified that this overall process can be challenging for everyone. As public representatives we come in contact with cases in which people living in communal settings and their families have a preference to stay there rather than to be moved to community living. Will Genio share its insights into situations that it might have encountered?

Dr. Niamh Lally

I thank the Deputy for her pertinent questions. On the last question about how challenging this process is, Genio has been involved with all ten accelerated sites, hand in glove with the HSE and especially with the staff tasked with implementing de-congregation. What we see from the findings is that it is very challenging. The Deputy is correct that these congregated settings are in violation of many human rights including the UNCRPD.

In the staff's self-reports of what it is like to work there, many of them use war terminology. It is like going to war and the closure of these places is very difficult. We are asking people to change long-standing institutional beliefs and practices that have been there over a very long period of time, as Ms Doheny pointed out earlier. It is not today or yesterday that these congregated settings have been there. They have been there for generations. We are asking people to change, to take on new roles, to develop new relationships, new values and very much new behaviours in how they work and how they approach that work. We are asking people to unlearn many behaviours and when people are managing that kind of change with staff, they can no longer be that buffer. There has to be that questioning and that time for discomfort. They have to be able to feel the pinch of that backlash that is coming. As one can imagine all of that is a highly emotive and an emotionally charged arena to work within.

What we have found from that is that it really is about capacity building, as Ms Doheny said. It is really about the person at the centre of that and sometimes the person gets forgotten at the beginning of this change process because everything is coming at one. There are HIQA orders, closure orders and media attention and rightfully so in that context. When one begins to unpack it and unpack the layers, there are very ingrained beliefs and practices that have been there and have served a purpose for a long period of time. To bring people around, the staff really need an opportunity and ability to work their way into reform. Whether that is through fidelity to a model, such as social role valorisation or the supported self-directed living, SSDL, model, Ms Doheny spoke about, they have a life boat and a way of being able to look at it and to change their practice by doing and not by theory, not by a nebulous concept or not by necessarily following a policy about which maybe all staff do not all know, that is, that policy implementation gap they are living in. That gives them the life boat and that is very much from the person-centred approach, that will and preference of the person.

As Ms Doheny also identified, it is about the time to do that for staff, the resource available and the training required and that the person is at the centre. All of a sudden one is spending a huge amount of time with an individual. One staff member told us she had worked with a lady for 30 years in the same setting. She said that it was only in the last six months that she realised who that lady was. She said she knew her as a client or as a patient but she never knew her as the individual she was. That was very telling.

The other aspect is that staff are transformed. Staff go on this journey but the person is at the centre of it. The person is the catalyst and the one pushing the agenda, pushing their will and preference and their right to move out into the community, to go back to their families and to go to the local GAA match, all of the things we take for granted. That gives staff their own journey of discovery and their own way of acting into it. It is that transformation among staff who have been there for a long period of time. Much of the time they can have the greatest challenges in moving in this way but when they move, we have found, whether from the research or the service reform fund, they move fundamentally and that transformation can occur. Again the person is always at the centre of that.

As regards how challenging it is, the research has definitely uncovered just how challenging it is but in terms of how to move that forward, there are many lessons to be learned. Through the research, we took cases of decongregation, where they were in the middle of it. They were in the middle of the fire. We took the lessons learned from persons in charge, community connectors, heads of service, heads of social care and everybody who was in this who had a skin in the game. What we took from those lessons was around what one does. As I said, there is no one way to do this. It is very complex systems change. There are many voices in the room and there are problems with different solutions. Using the business case and the Harvard business model, we took a teaching case and we brought people back into the room and told them what had been learned. It was not about the lessons learned or about the model. We said that if one is at a fork in the road and one takes the right turn, there are pluses and minuses to that route and that if one takes the left turn, there are pluses and minuses to that route. We asked what the least harmful scenario within this was. It was very much taking a business case and taking people around the country and, prior to Covid, bringing them into that workshop facility. We had huge sessions with 70 to 100 people from different organisations represented. For the people in the room it was very real and very raw but they could relate to it. That relatability is very important when people are in the midst of that change. It is taking the research and taking the lessons learned but making it very applicable and relevant to people. It is incremental change, so they are able to do something on Monday morning and are able to enhance that practice.

Through Covid-19 we moved those sessions on to webinars and again we ran six sessions in collaboration with the HSE national office so There is that feedback loop going back continuously. We found that there is no one way to do this but in order for that to sustain and embed it is incremental changes that get made. It is not very sexy or overly attractive it is that hard grind a lot of the time on the ground with the people. However it is the transformation in the lives of the people who are bring supported that reall,y staff have said "I am happy to go to work. I have hope. I know my practice was less than and very much less than previously. But I had an a-ha moment and I am able to move forward with that". They go on a journey then together. They leave the congregated setting and a lot of the time we say that is really the start line. People feel that they have arrived and are there but it is really the starting point in terms of community living and the UN Convention on the Rights of Persons with Disabilities in particular. I hope I have answered some of Deputy Cairn's questions.

During Covid-19, we moved those sessions to webinars and we ran six sessions all in collaboration with the HSE national office. We have that feedback loop going back continuously. We found there was no one way to do this but for it to be sustained and embedded, incremental changes are made. It is not very sexy or overly attractive and much of the time it is about that hard grind on the ground with the people. There is a transformation in the lives of the people who are bring supported. Staff said that they were happy to go to work, that they had hope and that they knew my practice was very much "less than" previously, but that they had had an a-ha moment and that they were able to move forward with that. They go on a journey together and leave the congregated setting. Much of the time we say that is really the start line. People feel they have arrived but it is really the starting point in terms of community living and the UN convention, in particular. I hope I have answered some of Deputy Cairns's questions.

Deputy Holly Cairns

I thank Dr. Lally.

Ms Tara Doheny

One of the other key ingredients, when we set out in the service reform fund, was that we sat down with the HSE national disability teams. Three members from that team worked with us hand in glove, as Dr. Lally said. We turned up to every meeting together so they picked up all of our tricks of the trade at the same time. When we set out the criteria for funding, we worked very much in tandem with the HSE. We said these were the criteria and we asked how these would land with the community health organisations, CHOs, and the senior manager within of each services. They obviously knew what funding the HSE service providers were getting, so they were able to say when applications came in that they were already getting funding for that and that there was no need to double fund. Funding was an important aspect of this as well. I remember going out to one of the services one time. It said it just could not buy a bus for this. We said that this was tied to people moving into the community. We need to be able to track people and see how it is going.

The HSE was involved in the training with us all along. It came with us on the journey, so it has the skills to continue with this work. As I said in the opening statement, the SSDL training is continuing through the national HSE office and the community practice. This is an excellent resource to have.

As for people and families who do not want to move, a key thing we ingrained in all the staff was that everybody had the opportunity and chance to work with a staff member in an individualised way and to say what they wanted and that they wanted to explore it. In the early days, we worked with people who really wanted this and with families who said they wanted a different type of service. As more people started to move, other families or individuals who were not maybe as keen said that people had their own house and that they had visited them and asked when they were getting their house and when they could move into the community and do X, Y or Z. That had a ripple effect. However, some people said it was not for them and that this was not what they wanted. Other arrangements were made in terms of moving into other group homes and so on. If there was a HIQA closure order and the building had to close, other arrangements were made. One thing we said at the outset was that everybody had to have the opportunity to do that one-on-one discovery, or that piece. That was a key as well, so that nobody got left behind.

Mr. Padraig Mallon

I thank Deputy Cairns for her questions and comments. She knew of us in Cork, which was good to hear. In terms of simplifying the services, I would like Ms Buckley to talk about that. What is really difficult for families, and Ms Buckley will speak about it from experience, is that the search for services and supports and the energy that needs to be put into that. There are challenges there. I agree with Deputy Cairns on simplifying the services and maybe Ms Buckley could talk about what it is like on a day-to-day basis trying to find, and get access to, a service.

Ms Cahill will talk about what our model does because we have a wraparound service and we also have that co-ordinated care plan. We develop a care plan for children, adults and families where they can be signposted to other services.

In response to Deputy Cairns's point about collaboration and not duplicating services, Crann has two key founding principles. We do not duplicate services. If a service already exists, we do not duplicate it because there is no added value. Nothing happens or nothing changes for the family; it just adds to that confusion of whether they go to A or B.

Ms Jarvey commented on the founding of the organisation. One of our founding principles was that we would not duplicate services. That has helped us to add value and important services into the mix. Collaboration is a key principle for us.

We began offering services in earnest in 2019. In the beginning when we had a team of two people we recognised we would not be able to do this alone so collaboration was hugely important for us. We are fortunate to collaborate with Ascend which are attending the committee remotely. That is an international collaboration which has helped us in giving us a strategic framework. From the initial contact, we had a ready-made strategic framework which we adapted, so we know the value of collaboration.

Locally, Ms Cahill and our team collaborate on a day-to-day basis with all the actors in the space offering services and supports for people with disabilities. Sometimes putting the energy into those collaborations can make a real difference for parents because - Ms Buckley will speak about this - they often do not know where to go next and if we can make a connection for someone through professional contacts, that can alleviate stress.

In the past three years, we have put a huge amount of energy into developing collaborations with organisations that provide services. We work with University College Cork, UCC, which gives us access to practical support from the therapy schools. UCC has helped us to expand our research and in practical ways. An example of our collaborations with organisations to deliver services involves one of our major initiatives this year when we developed an accessible co-working space for people with disabilities. As we all know, we have all moved in the past couple of years towards remote working and working either in the home or away from the office. The Department of Rural and Community Development invested significantly in that area through the National Hub Network. We looked at that and asked ourselves what we at the Crann Centre could do to provide support and a model where people with disabilities could have access to that new world of work and to the opportunities to collaborate in starting or accelerating their businesses or to work in a business where people want to come together in such a setting. We were fortunate to be able to collaborate with Cork County Council, Cork City Council, the Open Doors Initiative, Ballincollig Business Association and the rubicon centre at Munster Technological University, MTU. Through those efforts we managed to bring together a successful co-working space that is purpose designed for people with disabilities. People with disabilities are now using that space to work in a setting alongside others and grow their businesses. As we invested energy in collaboration, we were able to make those connections and bring in the local enterprise office. Sometimes those connections are the key enabler. Those principles of collaboration, trying to simplify as much as possible and not duplicating services, add value. Perhaps Ms Buckley can elaborate on that simplification. It would be interesting to hear the voice of someone who is working in that space every day and trying to find services for her family.

Ms Aileen Buckley

In the beginning services were fragmented and signposts were difficult to navigate. Many appointments were only about the child and when we walked into the Crann Centre, it was as though a light came on. The entire family was taken care of and looked after. My daughter was very well taken care of and she participated in many different services. She gained independence and resilience. That she would be able to be the best version of herself was important for us as a family. The setting is wonderful. It is now the one-stop shop for everything for our family and it is continuing into adulthood. We are in another time of transition now. My daughter is in her leaving certificate year and we will be knocking on the door of the Crann Centre for a long time to come.

Ms Colette Cahill

Of all of us in the room, Ms Buckley is the expert, not the rest of us.

As she described, we work with families across a life span from the time a person is born with a disability until the end-stage of life. We work with the whole family and the Crann Centre does not have an exit strategy. We do not discharge people at any point. They can come in and out of services and avail of them as needed. That is the beauty of the service we offer and of our model of care. In the generational approach, we support one generation who will support the other generation and that has a ripple effect. That is all. Ms Buckley has said it. We are the wraparound service.

Mr. Padraig Mallon

The challenges of rural Ireland were mentioned and Ireland is largely a rural country as we know. Ms Buckley's family lives in the country. Transport and accessing services is a significant part of the work for all of us.

As Ms Jarvey said, isolation is a significant issue for families, especially for children, teenagers and adults with a disability, whether in a congregated setting or in the home. We provide the simplest of programmes where we bring people together for a summer camp or to take part in our successful drama group that meets every Saturday morning. The drama group works with both children and adults with disabilities and the facilitators find that the value is not so much that participants are learning how to excel in Hollywood or on Broadway, but that they have the opportunity to come together and be around peers. They value that more than anything else. It is also an opportunity for parents to come together, so one simple activity such as the theatre group has a multiplier effect. The child or adult has the opportunity to participate, their confidence and networking skills grow, they learn how build social capital from an early age but, most important, for the parents who drop them off or choose to stay around, there is a significant upside for them because they get the opportunity to meet people like me, or I mean like-minded parents rather than people like me. The opportunity for people to come together, share experiences and grow is of huge value. The rural challenges that were mentioned are significant. Isolation is a real issue for many people but it is more pronounced in rural settings.

Senator Fiona O'Loughlin

It has been fascinating, heart-warming and inspirational to listen to the witnesses and learn about the work that can be done and how the lives of people with disabilities can be improved, although I appreciate we have a long way to go. It has been interesting to hear about the work of the Crann Centre and Genio. I must applaud Ms Jarvey for her incredible benevolence. I wish we had more people like her.

We all understand from the research that there is strong evidence to show that people with disabilities lives improve when they move to more home-like settings. That is the big challenge. Approximately three or four years ago a friend of mine who was director of nursing in a congregated setting told me a story. A young man who had only known this setting all of his life was in tears and the staff had to physically try to put him in a taxi to bring him to a new place. All of the staff were crying. He and all the staff members were bereft. While it clearly works in most cases, we must be cognisant of those who wish to stay.

It is all about that choice.

I come from County Kildare and I have seen evidence from the new community settings through the work of Care and the Muiriosa Foundation. Most of those houses are in Rathangan, Monasterevin and Newbridge. The integration has been top class, particularly in Rathangan and Monasterevin, because they are small communities. That is so important and hats off to the community because it is about that cultural shift and about hearts and minds. It is so important.

Going back to the drama Mr. Mallon spoke about, in Kildare Youth Theatre we are lucky to have drama for people, particularly young people, with intellectual disabilities. We have a Hollywood star. Conor O'Donnell, a young man with Down's syndrome from Newbridge, is in "Bad Sisters". I know his family very well and was on that metaphorical journey but could not tell anybody when he was going over and back to England to participate. I completely agree that it is just phenomenal how people's lives can change through those opportunities.

My questions are about new types of service delivery around individualised supports and personalised budgets and how that can help. The Independent Living Movement Ireland, ILMI, and Inclusion Ireland spoke at a previous meeting about the really difficult application process for people with disabilities and the fact it is different in every county. It is not transparent and it is very repetitive and complicated. I find form filling complicated. How can we have uniformity and make Government services more accessible?

I love the two-generation, 2Gen, approach at the Crann Centre. As for independent living, there is independent living within a house in the community but there is also independent living staying within a family setting and that is where the complications arise from a rural point of view, which Ms Buckley talked about. How can we ensure that we support the individual and the family, particularly in situations where parents are older and in their 70s and 80s? Quite often it is older women who have been widowed and have one child with a disability. There may be a family network around the person but it is still so important that if that is the best place for that person, they have all of the wraparound services. I think that is where we need to be going and that is why I really like what witnesses are doing. Could they outline how they decide what supports a family receives?

My last question is about what ILMI and Inclusion Ireland said here about the recommendation that 7.5% of all new social and affordable housing be ring-fenced for disabled people. They are also looking for a centralised list so it would not just be county-by-county. Do witnesses have any thoughts or recommendations they could make on that?

Chairman

We will go to Dr. Lally and Ms Doheny and then to Crann to address those points.

Ms Tara Doheny

Senator O'Loughlin mentioned Kildare and a number of the services there. Quite a few staff from there undertook the SSDL training and the community connector training, so I would be very aware of those services. What strikes me about the specific services the Senator mentioned is that there is an ongoing community of practice for the staff, so it is not just the move and then everything is left. It is very evident from the data we gather. That ongoing support is very important. Some 973 front-line staff, managers and families have completed SSDL training to date and that has been accredited through Athlone Institute.

It is not one-size-fits-all. There needs to be a menu of options so that when front-line staff are supporting individuals, they can look at what that person needs. We start with the person and work outwards as opposed saying we have a house and they need to fit in there. We all know that type of service delivery does not work. In terms of the support we have heard about, some people move back to their family home and are supported that way. There is an array of different types of community living supports available. However, I agree with Senator O'Loughlin that it is very important we have that drop-down menu of options, so that individuals can make an informed choice and sample things as well. I remember when I was at the front line a man wanted to live in an apartment and I kept exploring it with him. When he moved to an apartment, it did not work. The reason it did not work was that he only wanted to move to an apartment because all the nurses who worked with him lived in apartments. He was from the west and ended up living in a wee country house that was very similar to his home, so that was a lesson to me around exploring the reasons.

Services hold a lot of the moneys as well. They get a large amount of funding and they need to unbundle that funding to suit the individual needs of the people they support. Personalised budgets were mentioned and some people want to have more control over their budget, so that option should be available to people if they want to explore that. It gives people more choice and control over their life if that is what they want to do.

Ms Colette Cahill

From Crann's perspective, it is different from the work Genio has done with what would be classed as institutional-type homes or community home settings. Crann does not operate like that. We do not have a residential setting as such. We come from a different approach. The families we work with are predominantly with a physical as opposed to intellectual disability. However, at the same time, life skills from a young age are really important. Our programmes are designed to give them life skills in terms of budget management and being able to make a sandwich for themselves, or the life skills and adaptions that might be needed within their environment to ensure they can cope. Kitchens and so on can be set up in such a way. If one is a wheelchair user, one needs the counter to be at a certain height, so it can be accessed. They are the types of things but we work with the whole family on that.

Senator O'Loughlin talked about how we decide what a family needs. It is very much based on our two-generation approach. Based on our model, in our intake process, we very much look at what they want and we ask them. The stakeholders lead our services and we very much follow. They talk about what they want and we look at how we can support them to meet the needs they want for their life goals. As was said, people might not all want to leave home and might be quite happy to stay with their mammies or whatever. It is working towards what they want.

One thing we are working towards is talking to the families about end-of-life and about whether they have thought about what happens to their child or adult in terms of inheritance and who is going to care for them. We have those conversations and we do that from a legal perspective but they are educational sessions. We refer some of what arises out of that to other services which are a better fit to look at supported living for them.

Chairman

I call Deputy Higgins.

Deputy Emer Higgins

I thank the witnesses. I will start by saying it has been a really fascinating and important conversation. I also support people with disabilities living in the community. It is an invaluable way of empowering people to realise their full potential. I have experience of that in my constituency where we have Stewarts Care and Peamount Healthcare which do incredible work empowering people with disabilities to live both in congregated settings but also, critically, in community-based settings.

I listened to Senator O'Loughlin talk about the Hollywood star in her constituency. We do not have a Hollywood star that I am aware of but I know that one of our Stewarts small screen stars appeared on "First Dates Ireland" recently. It is fantastic to see things like that. It is a real glimmer into people's day-to-day lives.

Crann sounds like an incredible organisation and while I was so pleased to hear of what it is doing in terms of training and supports from a continence perspective for special needs assistants, SNAs, and teachers, I was also disappointed because I cannot believe this is falling to it and that it is not Government-funded.

How can we offer that level of training right around the country? What funding do we need? Is it something that Crann could roll out? Is it something that we would need to do in partnership with others? It is soul destroying to think that the State does not provide SNAs with the necessary training to support some of the children they are working with, or that nurses require additional training that is not provided by the State in order to facilitate respite care. I would love to get under the hood of that and what we need to do to rectify it.

I was particularly interested to hear Ms Buckley speak about the transition period when her child was starting secondary school, and starting in a wheelchair. The supports provided were such a benefit to her, to her child and to the entire family in terms of the mobility programme, including the confidence training which every young person could benefit from. It got me thinking. It is probably an ideal world scenario but does she think it would be helpful or beneficial if we could pinpoint particular periods in people's lives that are likely to be key transition areas - for example, if they are starting secondary school, if they are moving to a wheelchair as the result of disability and or if their family is separating? Unfortunately, in many people's lives there are going to be many key traumatic experiences in childhood. Maybe we could map those a little better and increase service support at that time. It strikes me from Ms Buckley's experience as something that might have a long-term and lasting impact. I know she benefitted from wraparound supports that unfortunately not every family has, but I think her testimony has shown why it is so valuable and why we need to reach a point where every family gets that.

With reference to 2Gen, the research cases and analyses are always most compelling and it is really fascinating to hear what the witnesses had to say. In terms of Genio, it also works so well when projects are built around the need and the voice of the client. I would be interested to hear what the key challenges are but also what advice the witnesses would give to the committee, which has the opportunity to put the relevant Ministers under pressure from time to time. What advice would the witnesses give us to try and help our public services to be better at this? We know the constraints in terms of resourcing, retention and recruitment of talent. What specific advice would they give us that we could pressure the Minister with to try to increase this area to make it better?

My question for Crann is really around support for SNAs and teachers, and what it is already providing and how it could roll that out further. For Ms Buckley, my question is about that transition period and whether in an ideal world it would be worth mapping out those peak periods of stress, so we could support people better. I apologise if people can hear my office phone ringing in the background.

Chairman

That is okay. We will start with Ms Buckley and then move on to Ms Cahill and the witnesses from Genio.

Ms Aileen Buckley

I can only speak of our own personal story. It would be fantastic to have additional supports, help and advice around those times of transition, such as before a child starts school, then moving on to secondary school, and now, for us, to third level.

Chairman

Thank you. Would Ms Cahill like to come in on the subject of SNAs?

Ms Colette Cahill

I would add to that in terms of that transition piece. That is a big focus for us in Crann. Our transition through life stages from toddler to child and our education and career pathways module in our service offering speaks to that and it is an area on which we are putting a lot of emphasis and focus in terms of support. We find in many cases that transitions in school are instrumental in life for any of us, not just for those with a disability. Transitions are huge. Having extra supports feeds into the training of the teachers and SNAs. Teachers work really hard in schools but do not often get released in terms of doing modules and understanding the needs of a child with a disability in the class, because they have so many different disabilities. You are talking about physical disabilities and the needs of a physical disability, and then the learning needs as well. We are addressing some of that through some of the transition pieces within our education piece, but a lot more needs to happen on that nationally as well.

Coming back to the Deputy's question with regard to continence and SNA training, and the teachers and the nursing training, she was right and I agree it is a bit disappointing that it is falling to us in Crann to deliver that. At the same time, we need to be fair and acknowledge that the nursing services and those providing training and supports in terms of continence and so on to families do a fantastic job. I have come from that background, so I know you do your best in that environment but you have big lists and you have a lot to do. The difference with what we are providing is that we are able to tailor it. We understand the families we work with, so we are able to deliver that training. For the SNAs and teachers, that training is really specified. They get the extra layer of support that maybe in a hospital setting you might not be able to give because there is such demand on the services across many different areas. All support to roll it out nationally would be greatly appreciated by Crann. We would love that.

Mr. Padraig Mallon

It may be helpful to quantify and put some money on it to provide some context. Our current continence service is provided by two nurses working 1.5 whole-time equivalents. They share the role and we can provide the service in CHO 4 for just under €175,000. To amplify and increase the service next year, we are looking at about €210,000. To move to three whole-time equivalents would cost just under €300,000. The number of families we could reach with that would be really significant because the demand is huge. As Ms Cahill said, for every family that has a child with a physical disability, particularly a neuro-physical disability and is in a wheelchair, issues of continence and self-management are going to be one of the primary concerns. We can significantly impact on that through our service, so it is really cost-effective. Our social return on investment tells us that for every €1 we spend, the stakeholders tell us that they are going to receive €4 in value. Not only is it effective but it is cost-effective. We can demonstrate and are happy to prove the value of it and our stakeholders will tell you that it has a high value for them.

Deputy Emer Higgins

Could I ask Mr. Mallon what footprint would be covered by the €300,000? Is he talking a couple of different CHOs? What would that look like?

Ms Colette Cahill

No, that would predominantly be just within our CHO 4 area.

Mr. Padraig Mallon

Cork and Kerry largely.

Deputy Emer Higgins

Thank you.

Mr. Padraig Mallon

You are talking about hundreds of families. As we said in our opening statement, we have presented a business case to the HSE locally for this. It is very supportive but it is a matter of funding. The Minister of State, Deputy Rabbitte, has been very supportive but we need to move it along because, as we said in our opening statement, this year the service is going to serve 260 families. We are without funding for this service. We are highly concerned that we will be able to continue. Ms Cahill has demonstrated the value and innovation of it and how we are working with SNAs. The multiplier of working with an SNA in a school, where several children have a disability, means the reach of that back into the family home is really significant.

Yes, it is a significant issue that it is not being offered elsewhere but Crann is set up to offer it. We do not currently receive any annual statutory funding for any of our services. That is a situation which we are really keen to change. Being here today affords a real opportunity to raise these issues but one can also see how practical it is. For less than €200,000, 260 families get really intensive, practical support which enables them to enjoy better health and wellbeing, opportunities to participate in society and a huge increase in quality of life. This applies not just to the person with the disability but also to their family. As Ms Jarvey mentioned earlier, self-management really is a human rights issue. The capacity to be able to manage one's own continence goes to the core of a person's being. It really governs a person's opportunities for equitable participation in society. In terms of money well-spent, this would be really significant to us and would deliver huge value for money.

To come back to the transitions, this year we were delighted to receive funding through SOLAS and the mitigating against educational disadvantage fund, which is a really important one. We have submitted an application to work with the Cork Education and Training Board on an initiative which, thankfully, it saw the value of. It focuses on mentoring and supports parents and students to give them the right support at key points of transition. Most importantly, that mentoring helps the parents and students to make the best and the right choices for themselves. It also enables them to understand that their disability does not necessarily need to limit them in education. We have been able to deliver supports for 15 learners and their families and we will have the data that will evidence the effectiveness of that coming through over the next couple of months.

Ms Tara Doheny

I thank the Deputy for her question on the key challenges. There are always lots of challenges. We were fortunate to have been learning from our demonstration project back from 2008 to 2013. We could see from those initial small grants what worked and what did not work. When we moved into the service reform fund phase, we scaled up the programmes in

terms of looking at the larger institutions and supporting that work. What Genio brought to the table was private funding. We were able to set out in terms of the conditions what we wanted and that was the voice of the service user and bringing improvement to their lives.

When we sat down to look at an invitation for funding to go out to the services, we sat down with the HSE. The two areas that were awarded the most funding were the stakeholder engagement piece and sustainability. In terms of the stakeholder engagement piece, people applying to the fund had to illustrate how they conducted the stakeholder engagement and how they worked within their community healthcare organisation, CHO, or within their service on what people wanted. In terms of sustainability, we could not allow people to move to new living arrangement where they did not have the funding worked out at a local level. This was quite challenging.

This was huge shock to the system for many organisations in terms of having to talk to finance and HR within their own service. We were quite adamant that these were the things that we would not budge on. When the applications for funding came in, there was a grants committee, made up of the funding partners and family members. These applications were scrutinised very heavily and not everybody got funding. We had people calling us to say they did not get funding and that they wanted to be on the list. Some services said they needed to be on the list to be seen to be doing well but our response was that they did not demonstrate how they were doing that through the application process. They also had to detail in their budget what they were going to spend the money on and how many lives were going to be impacted. These were all challenges. The way we overcame them was in terms of the private funding.

We lifted the rock people often do not want to lift around unions and how congregated services can be dismantled. We did this in partnership with the HSE and at all times we had it with us on this journey. There were difficult conversations. Sometimes we had to ask for money to come back because a service was not employing the community connectors to do the piece of work that was agreed on. We had grant conditions and contracts with each of the services. We outlined the conditions and one of these was training where services sent their best and brightest and their champions of change on SSDL training.

What happened very quickly was that two teams developed within the services. The change team was ring-fenced to do the work. This was not an add-on to the everyday job. Everybody was so stressed in their normal day-to-day job so the change teams led out in this new way of working. One could very quickly see the benefits for the individuals.

I refer to the visits. I remember the first visits we went on everybody was almost rolling out the red carpet. It was not meant to be like that. It was more of a support visit in terms of how could we help. From those visits around the country, we could hear that people were all saying the same thing. They had now employed many connectors but they did not know how to support them within their structures. They said they needed training and to be connected to other services.

Pre-Covid, services did day visits to each other to learn from one another. People came in and told their own stories. We started to video some of these and captured the journey of people. It was not all roses. An awful lot of heavy lifting had to be done but it was done in partnership, with the service user at the centre of that.

Chairman

I thank Ms Jarvey, Mr. Mallon, Ms Cahill, Ms Buckley, Ms Doheny and Dr. Lally. I also thank Ms Haight and Ms Toze who joined us from Washington DC. We are delighted they joined us and gave us their insights. My job is to wrap up the meeting and to thank the witnesses for coming before us.

The discussion we had was on supporting people with disabilities leaving their communities. The most important thing is the lived experience and Ms Buckley gave us that in a very sincere way and we thank her for that. It is not easy for families to put on the public record the challenges they face. The witnesses gave a sense of thinking outside the box and challenging the different silos.

I picked up on a couple of words. The 2Gen model is so important because we need to have a family focus. The social model is important because for so long, people with disabilities were treated under a medical model. A social model is so important for society as a whole in terms of integration. Those were the challenges.

The witnesses spoke about the training of SNAs. It is a huge indictment on the State that there is not a service there. That is a basic human right for kids when they are going to school. That is something that we will continue to raise and reflect on. I refer to the silos, the flexibility and the greater social good, which is to ensure people with disabilities are integrated into society. It is not just the person with the disability; it is their families and their communities. Some communities can be absolutely fantastic while others do not embrace it as much. Our challenge is to do that.

I have been working with Crann over the last few months. I think Mr. Mallon rang me on a Friday afternoon in February. Much has been achieved. Deputy Higgins mentioned the Stewarts project. There is one common thread between the Stewarts project and Crann and that is Mr. David Doyle, who is consulting with the Stewarts project in developing the equine centre. We are eternally grateful to the Crann Centre for the sponsorship of the land. We cannot say enough about what has been done for us. It is going to be a very exciting project and a fantastic project for the CHO 4 and for the area. Both Crann and the Stewarts project should continue to challenge the system.

I refer to the various mindsets in regard to people with disabilities.

In the late 1960s when community groups and organisations came together to set up the section 38 and 39 organisations, that was one of the major developments for people with disabilities, but it is now time to further challenge the situation. I urge the organisations to keep challenging the system. The committee is charged with trying to make the lives, families and communities of people with disabilities better. We hope that we do that every Thursday morning. We will continue to do so. I sincerely thank all the witnesses for coming today. They gave us very enlightened information and a lot on which to ponder as we continue with this module of engagement on the UNCRDP.

Members are practising bilocation every Thursday morning. At one stage, they are in the Chamber and at another stage they are sitting here. Sometimes we might wonder, but when members come on they know every single thing that has happened in the meeting, so they are listening to the meeting while they are doing something else. I thank members for their continued effort. It is only through the strength of the questions from our members and the genuine interest they have in the subject matter that our committee can be strong. I urge them to them to keep up the good work, although I know they have competing challenges. I also thank our team who keep us all on the straight and narrow and keep things ticking over.

The joint committee adjourned at 11.41 a.m. until 10 a.m. on Thursday, 27 October 2022.